Volume 3, Issue 5&6 September/October 1999 Down Syndrome Autistic Spectrum Disorder& Special Issue More Than Down Syndrome: A Parent’s View by Joan E. Guthrie Medlen t must have been in a different life…when my greatest concern was “Down syndrome.” In those days, I’d find Andy I in his room re-enacting “Beauty and the Beast” with rubber figures in his dollhouse. Andy gave “Beast” a particularly throaty voice. We saw pretend play; we saw personality in his play. He imitated his brother’s every move, which Ryan found endearing. Together they investigated the corners of the house, gleefully chased me with their cars, or ran to the window to see the fire truck go by. Our lives looked like what you expect from a family of a child with Down syndrome. But it must have been a different life because it bears no resemblance to our lives with Andy today. Today, at age 10, an unexpected or unfamiliar visitor to our home sends Andy running to hide in his room until he decides to investigate them. Today I must say “look at me” a hundred times to ensure he notices and listens to me. Today I see him watch other children and want to play with them, yet be overwhelmed or scared. This means he begins to “flap,” and the other children are equally afraid of him. Friendships require a lot of work, training, and facilitation by the adults in Andy’s life. At the end of today I will gather up the jump ropes and clackers that are inseparable from Andy and put them in the “dangly things” box for him to earn access to again tomorrow by work- ing through a specific task with me. Today I know the isolation of being the Continued on page 3 mother of a child who is different from his peers with Down syndrome.

More Than Down Syndrome: A Parent’s View 1 Gross Motor Development in Children 23 From the Editor: The Journey Continues 2 with Down Syndrome & Autistic Spectrum Disorders: Clinic Observations Down Syndrome & Autistic Spectrum 8 Changing Behavior & Teaching New Disorder: A Look at What We Know 25 Skills 31 Dual Diagnosis: The Importance of 16 Sensory Integration: Clinic Observations Diagnosis and Treatment in thisof Childrenissue with Down Syndrome & Language & Communication: The Key is 18 Autistic Spectrum Disorder 36 Effectiveness Disability Solutions The Journey ContinuesSeptember/October 1999

This issue of Disability Solutions contains the largest collection of articles for families of children with Down syndrome and autistic spectrum disorder available. These articles address the first concerns a family may have about DS-ASD. They include: developing effective language and communication skills, sensory integration, tips on changing inappropriate behavior, teaching new skills, a medical overview, and more. But there is simply too much information to cover. In the future we will look at other equally important topics such as: teaching strategies, strategies for communicating, developing family support, and looking ahead to the adult years. It’s been a few months since I wrote the article about our journey with Andy (see page 1). As I write this, it seems unfair not to let you know how things are going as we head to press. After so many years of complicated school situations, we have begun the best school year I can remember (knock on wood!). Andy has grown tremendously in the 17 months since he received the diagnosis of autistic spectrum in addition to Down syndrome. He has a gaggle of friends who honestly enjoy being with him. Sometimes that means they all just hang out in the sun. Sometimes, when he is “stuck” in a transition, it is his classmates who are successful in helping him understand where he needs to go next. From my view as his mother, the greatest changes have been the rediscovery of the child I knew years ago. I thought I had lost that part of him forever: his laugh, his teasing, his love of dancing and more. Even more astounding is the rate at which he is growing emotionally and academically, in ways I didn’t expect. I can’t keep up! Even with all of these good things, we still face sleep deprivation, the need for 24-hour positive behavior support, time-consuming teaching methods to learn everyday tasks, and the struggle of trying to be a family. To deal with this, we have begun a pro- cess of asking people into our lives as a part of our cir- cles of support. It is hard. It is scary to let people into o u r lives. It’s even harder to ask. It is, however, neces- sary if Andy and Ryan are going to have meaningful a n d fulfilling lives. If you are interested in developing this type of support for your family or for someone else, Ann and Rud Turnbull of the BEACH Center i n Lawrence, Kansas have developed a method worth i n - vestigating called Group Action Planning. You can find information and materials related to setting up a GAP at the Beach Center Website (http://www.lsi.ukans.edu/beach/html/products.htm) or give them a call (785/864-7600). It has been four years since our lives dramatically changed due to Andy’s autism. I don’t want to live them again. They were lonely and full of despair. If you have a friend or know someone in your support group who is having similar struggles, don’t wait for them to ask you for help. They aren’t coming to you or to the group meetings because it hurts or it is too hard to leave their child right now. If you want to help, show up at their door and offer to clean, cook, do the laundry, sit and talk, drive their other child to soccer, or be with their child while they sleep for a while. The gift of your time, without judgement, will mean the world to them. It still does to me. After all, we’re far from done with this journey.  from the editor Joan E. Guthrie Medlen  Volume 3, Issue 5 & 6 Disability Solutions More Than Down Syndrome

Continued from page 1

And yet, today is better than yesterday. “Yesterday,” The speech language pathologist felt that we should somewhere around age 5-7, he seemed to magically begin with concrete objects instead: a nipple to say “forget” nearly everything: potty training, eating with he wants a bottle, a piece of a toy to ask for it, and utensils, his signs, word approximations, all of it. He so on. She felt that he didn’t have the prerequisite was afraid of everyone and everything. So intensely skills for sign language. But Andy didn’t like using afraid, he lashed out at us with no warning and for no objects. So, our EI Consultant and I chose some reason we could understand, hitting, biting, with wild first signs and gave it our best shot on our own. He eyes and a beet-red face. It seemed Andy never slept learned to sign “more” almost immediately. Informa- more than three hours a night. He spent his nights tion is powerful. I kept reading, asking questions dangling socks and jump ropes endlessly while I sat and challenging. nearby waiting for the right time to suggest we try to During this time, my two boys were inseparable. go to bed one more time. And yesterday I had trouble Andy loved his big brother. He followed him every- finding someone to listen to my where even before he could walk. despair and questions about his He dressed like him, he wanted developmental regression. Yes, it to sleep with him, they played must have been a different life, a together with cars, on the slip-n- different child…. slide, and so on. There were times And so goes the story of our jour- when people would stare at us or ney, one that leads to a dual diag- we would feel the “usual” pains of nosis: Down syndrome and autistic having a child with a disability, but spectrum disorder. Discovering the for the most part, I had grown to reason for Andy’s developmental accept this twist to my family. We history and giving it a name has had fun. been a long and very difficult jour- I can no longer pinpoint when ney. It is full of controversy, argu- things began to change. After so ments, heartache, and unending many years it is hard to tell the questions. difference between the change from It began similar to many parents his being with me at home all day to of children with Down syndrome. attending a preschool environment During my pregnancy we were and the possible signs of autism. In informed I had a low AFP value, preschool, though he enjoyed it and which led to an ultrasound, and most of the staff was positive, I was for us, nothing more. Somehow in asked for the first time to demon- my heart I already knew Andy had Down syndrome. strate Andy’s ability to make a choice. I insisted the The day he was born and the extra chromosome con- key was in how things were presented. If I had known firmed, I did what I seem to do best: ask questions how many times I would have this same conversation and investigate. This intense, never-ending inquiry, about “choosing,” I would have videotaped it. After coupled with the belief that my children deserve my letting the special education consultant pick two toys best effort, serves me well. I’m not sure where it came for Andy to choose between, I interrupted his play from except perhaps from my training as dietitian—it’s and asked him to come talk with me for a minute. always better to say, “I don’t know, but I’ll go find out.” We sat on the floor cross-legged with a connection I didn’t know anything about Down syndrome and I I’ve always known with him. I asked him to scoot was determined to find out. closer and told him we needed to show his teacher I read articles in the medical library at work and how he likes to choose his toys. I showed him both saved money to buy books about Down syndrome. I toys and asked him which one he wanted to play asked our Early Intervention Home Consultant about with. He chose one, we played for a few minutes and teaching Andy sign language when he was about 7 he wanted to leave. I told him it was fine he wanted months old. She didn’t know what to think. Like me, to be all done, but he needed to say “good bye” to she headed to her best resources: the team speech language pathologist and recent literature on the topic. Continued on page 4  Disability Solutions September/October 1999 More Than Down Syndrome:

Continued from page 3 the toy first. “Bah,” he said, and he was off to greater Even so, we moved him to a different school, in a prospects. With that demonstration, I returned to the different neighborhood, where he was to spend part consultant expecting to hear validation that Andy of his day in a general education classroom and part could, after all, make a choice. Instead she asked, “Is of his day in a special education classroom “remedi- that about the length of time you would expect him ating” some of his skills. For us, this was a disaster. to play with that toy?” Always a challenge, always a At the time I was certain it was solely because of the test, always a question, but never belief. I felt defeated incompetence of the teacher and her inability to con- and insulted, but I still believed in my son. trol a classroom. These troubles were horrific for Andy, I began to wonder why Andy wasn’t talking. One of who couldn’t come home and tattle on everyone to his the assistants in his classroom said he seemed to do parents. He was poked, pushed, prodded, and teased well with another student’s picture book. I couldn’t by other children. We sent a copy of the photo cards find anything written about children with Down syn- he used at home to communicate to school with him. drome using symbols. He increasingly didn’t fit my They were left in a closet. In this classroom, within the image of a “typical” kid with Down syndrome. When I first three months of school, my son lost virtually every shared my concerns with other parents they replied, skill I had cherished: no more trip-training, no more “There is no ‘typical’ Down syndrome.” It must be my word approximations, no more signing, no more happy imagination, I decided. Years later, I looked through child. He began biting us and reacting violently for no the notes I kept and found multiple references to a apparent reason. His eyes would grow wild and his regression in his skills. I attributed this to teaching face red with combined fear and anger. He would lash strategy and environment, but I quietly wondered if out at me with no warning. I was covered in dozens there was more. of bite marks. This was not “typical” Down syndrome. Our induction to school-aged services was a rough Where did my child go? He was 6 years old. one. Andy had not continued with his acquisition of Today I believe this is when Andy’s autism fully sign language despite our work at home and with a entered our lives, even though we didn’t recognize it. private speech pathologist. He used about 10 sign Yes, the classroom was unacceptable, but his reac- approximations (though he understood many more) tion and the regression are, I think, primarily due to and only a few word approximations. Communication autism. I’ve heard parents and professionals say that was a problem and his struggles in this area were seen with the onset of autism, it’s a downward spiral until as a reason not to be included in a general education you hit bottom. Once there, there is nowhere to go but classroom. I received my label, “mother in denial.” forward and up. I don’t think Andy’s “low” needed to During this year Andy began to play excessively, be quite so devastating. almost obsessively with strings, ropes, and other We moved Andy mid-year into a life skills classroom “dangly things.” To me, this was a sign that we really where the teacher wanted him. She had experience needed to work on finding a way for him to commu- with children living the hell Andy was in and believes nicate. He also didn’t seem to enjoy being with the in and values all of them. In two weeks, the biting other children like I expected. He preferred to watch decreased dramatically, he was trip-trained again, but and was careful in his attempts to join in. He delighted he still dangled things—anything—incessantly. in watching his classmates perform skits and pup- Over time we noticed Andy doing other things that pet shows, but would resist participating. His play were puzzling. Things that were not what I equated at home lacked the imagination we had seen in the with Down syndrome: past: he no longer created his own version of “Beauty  He liked being alone. He didn’t seem to miss us if and the Beast” in his dollhouse or imitated what we we didn’t interact with him. He was content, though did around the house. But I was so mired in philo- not productive. sophical warfare about his placement, I missed these  He seemed lost to us in his world of his own filled subtleties in his development. The focus shifted from with dangling objects and watching videos. advocating for the best strategies for teaching Andy  He seemed interested in other children, but scared to learning the laws surrounding his rights to a Free of them. and Appropriate Education—and reacting to blatant  He was afraid of everyone. When we had visitors violations of those rights. I often wonder how different or family, he would run to his room and slam the things would be if my energies weren’t distracted by door. these concerns.  Volume 3, Issue 5 & 6 Disability Solutions A Parent’s View

 He had no speech, nor did he have communicative intent.  He didn’t know how to “play.” He seemed to forget the imaginary games he played and never imitated anymore.  He would be overcome by certain situations, such as a large room (like a gym) and either “belly flap” (lay down on his stomach, arch his back, and flap his arms and legs) or run around in circles flapping his arms.  Various evaluations mentioned his “scattered skills” instead of a global developmental delay. He seemed to learn step 3 before steps 1 or 2.  He seemed to need very little sleep. He would sleep for 3 or 4 hours and then go to school. I was ex- hausted and dreaded the night. What did all this mean? His teachers, therapists and I would talk about it often. In those discussions I would hear questions and comments about his scattered skills and other things, but no solutions. because they want an ordered progression. It is true When I have questions, I begin that same pro- that all the steps serve a purpose. But to engage him cess that started when he was born: I question and you must capture his interest. And what Andy wanted investigate. I believe Andy deserves more than an was some control over his life. “adequate” education or support. He deserves best Reading all I could understand about Augmentative practices in all disciplines so he can be successful. and Alternative Communication (AAC), discussing it Every child does. with a friend, and armed with BoardMaker™, a com- Any time there are concerns about a child’s devel- puter program to generate Picture Communication opment, it is best to begin by looking at possible medi- Symbols, I dove in with both feet. Before I knew what cal concerns. Andy is very healthy really. He did not happened, I was constantly running to the kitchen to have any complications at birth. He had pneumonia answer my son’s demands on his voice output device. when he was young followed by recurrent ear infec- At first, he pushed any button just to see me run. tions, middle ear fluid, and eventual tubes. He now What power! “Golly, I push this button and everyone has “permanent” tubes that will need to be removed comes running. How funny. Let’s see how many times soon. His hearing is “low normal,” his vision is fine, I can make them do it.” I didn’t get much support for and though he will get every virus traveling through using this method in the classroom, but our private the air in a classroom, he is generally well. speech pathologist worked along with me devising Having ruled out medical concerns my focus hov- games and methods that helped us see what Andy ered intensely around finding a way for Andy to com- might like to say. municate. I believe that behavior is communication And you know what? He played games. He played and that odd behaviors are Andy’s way of telling me pretend games with Bert by activating buttons that things. Discussions with the speech pathologist at the said what his Bert figurine wanted to do (eat, drink, school were frustrating. I was told Andy didn’t have or read a book) and together they would make Bert do the prerequisite skills, he didn’t have communicative what he commanded. We were going forward again. intent, and he didn’t know how to choose. It felt like The key was not focussing on steps one and two, but a recurring nightmare. At home, though, Andy did meeting him at step three, where he got what he was make choices using a Yak Bak (a hand-held mes- interested in, then reaching back to pick up steps sage recorder) and pictures. I focussed on step three one and two. where we were seeing success and everyone else was Understanding what makes Andy tick is like a drug looking at steps one and two. I don’t believe this hap- to me. It’s addictive. Success leaves me wanting even pens because people don’t want to teach Andy, but Continued on page 6  Disability Solutions September/October 1999 More Than Down Syndrome: Continued from page 5 more. Having nothing more tangible to go on than in my state, nor is there one nearby. In order to feel Down syndrome, I read Pat Oelwein’s book, Teaching confident about what I learned in an evaluation, I Reading to Children with Down Syndrome (Woodbine wanted to see someone who really understood Down House, 1995) again. Using my computer and photo- syndrome and autism. If we had to travel, I wanted graphs, I began making books for Andy. They all had to go to the best. themes: “I See..,” “I Like…,” and “Who Is….” Andy There were two doctors who had the experience loved them and was drawn to the pictures. But I soon I sought. Both were three time zones away from us. realized he was endlessly looking at the pictures. It When I contacted them, they were helpful, compas- became another way for him to leave our world for sionate, and very knowledgeable. For the first time I his. I was stuck. He still spent most of his life with his was telling someone about my child who had seen it jump ropes, staring at the photos in his books, and before. Neither made me feel I was over-reacting or flicking any picture cards we tried to use. in denial, nor did they question what I shared about Frustrated and unable to find a way in to my son’s Andy. world of dangly things, I began to look through jour- I shared with Andy’s teacher that we were taking a nals, IEPs, photo albums, and videotapes for ideas. week off to get an evaluation for autism by someone One night I pulled out an old video of Ryan and Andy who had experience with other children who have playing. Andy was not yet walking. He Down syndrome and autistic spec- was two years old, and Ryan 5. I was trum disorder. To my surprise, she mesmerized by the joy of their play. told me she was relieved I was doing They chased an electric car, danced this because she had been wonder- to music, and ran to the window to ing how she could suggest this to wave goodbye as their Dad left for me about Andy. I often wonder how work. There sat Andy, being hugged many people felt this way. and smothered by his brother, beam- Over the course of five days, we ing into my camera. Looking directly were scheduled for a full evaluation: at me. I slipped in a tape of Andy Medical, Neuropsychology, Behavior working with his voice output device Psychology, Speech and Language, the week before at a speech session Augmentative Communication, and 7 years later. I was stunned. They Occupational Therapy. We were did not resemble the same child; his scheduled for an EEG, but due to brightness was gone. He looked up at scheduling conflicts that was post- the camera that invaded the therapy poned for another time. session, but there was no real con- Andy scored well within the range nection with the person behind it. He of autistic spectrum. Medications didn’t look at me. My heart sank. I designed to help with some of Andy’s cried. That toddler will never be back. more difficult behaviors (impulsivity, fear, and repeti- I shared the tapes with a few friends. One friend tive motions) were suggested. I always thought that asked me in a way I couldn’t misunderstand, “Have moment would be devastating, but it wasn’t. I’ve pon- you considered autism? Have you considered hav- dered why that is and now realize that it is because ing a full-blown evaluation done? It’d be hard, but I every person we met with, including the neuropsy- think you owe it to Andy.” It wasn’t the first time he chologist who conducted Andy’s first—and last—IQ had mentioned it, but it was the first time I heard test (I don’t believe they’re very helpful), greeted Andy him. I didn’t want to consider it, but I had no other with respect and looked for all the things he could do. choice. For the first time I wasn’t hearing about prerequisite Over the years I have made some connections that skills or what he couldn’t do. In fact, during our visit I hoped would be helpful. I e-mailed a co-director of with the augmentative communication specialist, the Down Syndrome Medical Interest Group, of which I was able to share my frustrations about making I am a member. I explained to him that I wanted to choices and prerequisite skills for using augmentative investigate the possibility of Andy having autism, communication. She spent time trying to understand but that I was unwilling to go to “just anyone” for everyone’s concerns, but in the end, she agreed with this evaluation. There is no Down Syndrome Clinic my assessment of Andy. He made choices for her.  Volume 3, Issue 5 & 6 Disability Solutions A Parent’s View

He liked using voice output. She felt he understood communication and had communicative intent, but that he didn’t understand the rules to communicating because they were different at home, at school, and in the community. At the end of our week I left a new mother. I learned a lot about my son and he was given a new diagnosis. Most importantly, I was validated in the overall direction I was taking with him. What a gift. It is still among the best things I have done for Andy and for myself. The diagnosis or label of Down syndrome and autis- tic spectrum disorder (DS-ASD) came as no surprise. Even so, I had no idea what to do with the information. Andy and his cousin, Kealey Medlen, play with a How does it change what I do with Andy? How does all over him, but it’s the autism that gets in the way it change how he learns? Literature searches turned of his learning and reacting in a way that you expect up next-to-nothing on the subject. from a child with Down syndrome.” This approach Since our visit I have focussed my questions and has worked well. investigation on solutions for Andy: teaching methods, Don’t be afraid to admit that you need help. I wish communication strategies, and even behavior plans. I had asked for help earlier. The needs of a child with We chose to try one of the medications suggested DS-ASD are immense. It is exhausting. The obstacles to us with what I consider good results. He doesn’t you face in going forward will always be there. This get lost in his own world anymore. He is staying in is especially true because the idea that children with ours, along with his jump ropes and other favorite Down syndrome can also have autistic spectrum dis- toys. He is clearly making choices, and beginning to order is relatively new to professionals. answer questions with his picture symbols and voice I have found it difficult to accept that I cannot do output device. And this year he made some friends this alone. But I can’t. There really is no reason to at school. try to except for my pride and fear of being rejected This issue of Disability Solutions is a collection of when I ask for help. I am now beginning to work on information that I feel is essential for parents who are developing a better support network for our family. either concerned their child may have DS-ASD or is Even this takes time and energy that is in short sup- diagnosed with DS-ASD. It is all information I wish I ply. Yet I can see the impact it will have on our quality could have had immediately: of life. It gives me hope.  a medical and research overview, Yes, it must have been a different life when my  steps to communication, greatest concern was “Down syndrome.” We are here  suggestions for teaching, now, in a new life, we are going forward again, and  suggestions for changing inappropriate behav- Andy is happy. We have a long way to go with him. iors, There is still much to learn. I hope that by sharing  an explanation of sensory integration, our journey to this point other parents and profes-  observations of gross motor skills, and sionals will open their hearts and minds not only to the idea of the dual diagnosis, but to the possibilities  resources. that exist in every child. If you are a parent of a child Every resource in this issue has been helpful to me in some way. There isn’t information specifically about    how to teach children with DS-ASD, but there is infor- mation about teaching children with Down syndrome Joan E. Guthrie Medlen is the mother of Ryan, 13, and information about teaching children with autistic and Andy, 10, who has Down syndrome and autistic spectrum disorders. One of the best pieces of advice spectrum disorder. Joan is a registered dietitain and I received early was from a father of an 18-year-old the editor of Disability Solutions. She and her family with DS-ASD: “Consider the autism as the primary reside in Portland, Oregon disability. Andy may have Down syndrome written  Disability Solutions September/October 1999

Down Syndrome and Autistic Spectrum Disorder: A Look at What We Know

by George T. Capone, M.D.

uring the past 10 years, I’ve evaluated hun- impairment without further investigation or interven- dreds of children with Down syndrome, each tion into a diagnostic cause. Today, the medical pro- Done with their own strengths and weaknesses, fession recognizes that people with Down syndrome and certainly their own personality. I don’t think I’ve may also have a psychiatric-related diagnosis such met a parent who does not care deeply for their child as ASD or Obsessive Compulsive Disorder (OCD). at the clinic; their love and dedication is obvious. But Because this philosophy is relatively new to medical some of the families stand out in my mind. Some- and educational professionals, there is little known times parents bring their child with Down syndrome about children and adults with DS-ASD medically or to the clinic—not always for the first time—and they educationally. are deeply distraught about a change in their child’s Over the past six years we have gathered data and behavior or development. Sometimes they describe studied DS-ASD at Kennedy Krieger Institute. We situations and isolated concerns that worry them such have collected and analyzed data from clinical medi- as their child has stopped learning new signs or us- cal evaluations, psychological and behavioral testing, ing speech. He is happy playing by himself, seeming and MRI scans of the brain. We now follow a cohort of to need no one else to make the odd game (shaking approximately 30 children with DS-ASD through the a toy, lining things up) he is playing fun. When they Down syndrome Clinic, possibly the largest group of call to him, he doesn’t look at them. Maybe he isn’t children with DS-ASD that has been gathered. hearing well? He will only eat 3 or 4 foods. The sug- gestion of a new food, or even an old favorite, brings What Should I Look For? about a tantrum like no other. He is constantly star- ing at the lights and ceiling fans. Not just while they Signs and Symptoms pass by, but obsessively. Getting him to stop staring As parents, it is common, if not expected, for you at the lights is sometimes difficult and may result in to worry at times about your child’s development. a scene. He requires a certain order to things. Moving It is also common to hear only part of the criteria a chair to another spot in the room upsets him until for a particular label. This is especially true when it it is returned to its usual spot. comes to DS-ASD because there is little information Some families do their own research and mention available on the topic. This can be especially trouble- they think their child may have autistic spectrum some if your child suddenly picks up a new habit disorder (ASD) along with Down syndrome. Others you associate with ASD such as incessantly shaking have no idea what may be happening. They do know toys. The children we have seen at Kennedy Krieger it isn’t good and they want answers now. This article Institute who have DS-ASD present symptoms in is for families in situations like this and other, similar several different ways, which we have separated into ones. If your child has been dually-diagnosed with two general groups: Down syndrome and autistic spectrum disorder (DS- ASD) or if you believe your child may have ASD, you Group One will learn a little more about what that means, what we are learning through data collection, and insights Children in this first group appear to display “atypi- to the evaluation process. cal” behaviors early. During infancy or toddler years There is little written in the form of research or you may see:  commentary about DS-ASD. In fact, until recently, it Repetitive motor behaviors (fingers in mouth, hand was commonly believed that the two conditions could flapping), not exist together. Parents were told their child had  Fascination with and staring at lights, ceiling fans, Down syndrome with a severe to profound cognitive or fingers,  Volume 3, Issue 5 & 6 Disability Solutions

A Look at What We Know

 Extreme food refusal, ASD 101: A Crash Course  Receptive language problems (poor understanding and use of gestures) possibly giving the appearance Signs and Symptoms Vary that the child does not hear, and Although we are documenting some similarities in the  Spoken language may be highly repetitive or way DS-ASD presents, autism is what is considered a absent. spectrum disorder. This means every child with DS- Along with these behaviors, other medical conditions ASD will be different in one way or another. Some will may also be present including seizures, dysfunctional have speech, some will not. Some will rely heavily on swallow, nystagmus (a constant routine and order, and others will movement of the eyes), or severe be more easy-going. Combined hypotonia (low muscle tone) with a with the wide range of abilities delay in motor skills. seen in Down syndrome alone, If your child with Down syn- it can feel mystifying. It is easier drome is young, you may see only if you have an understanding one or a few of the behaviors listed of ASD disorders separate from above. This does not mean your Down syndrome. child will necessarily progress to Autism, autistic-like condi- have autistic spectrum disorder. tion, autistic spectrum disorder It does mean that they should be (ASD), and pervasive developmen- monitored closely and may benefit tal disorder (PDD) are terms that from receiving different intervention mean the same thing, more or services (such as sensory integra- less. They all refer to a neurobe- tion) and teaching strategies (such havioral syndrome diagnosed by as visual communication strategies the appearance of specific symp- or discrete trial teaching) to pro- toms and developmental delays mote learning. early in life. These symptoms result from an underlying disor- Group Two der of the brain, which may have A second group of children are multiple causes, including Down usually older. This group of chil- syndrome. At this time, there is dren experience a dramatic loss (or some disagreement in the medical plateauing) in their acquisition and community regarding the specific use of language and social-attending skills. This de- evaluations necessary to identify the syndrome or the velopmental regression may be followed by excessive degree to which certain “core-features” must be pres- irritability, anxiety, and the onset of repetitive behav- ent to establish the diagnosis of ASD in a child with iors. This situation is most often reported by parents Down syndrome. Unfortunately, the lack of specific to occur following an otherwise “typical” course of diagnostic tests creates considerable confusion for early development for a child with Down syndrome. professionals, parents, and others trying to under- According to parents, this regression most often oc- stand the child and develop an optimal medical care curs between ages three to seven years. and effective educational program. The medical concerns and strategies for these There is general agreement that: two groups may be different. There is not enough  Autism is a spectrum disorder: it may be mild or information available to know at this time. However, severe. regardless of how or when ASD is first discovered,  Many of the symptoms overlap with other condi- children with DS-ASD have similar educational and tions such as obsessive-compulsive disorder (OCD) behavioral needs once they are identified. or attention deficit hyperactivity disorder (ADHD).

Continued on page 10  Disability Solutions September/October 1999 Down Syndrome and Autistic Spectrum Disorder: Continued from page 9  ASD is a developmental diagnosis. Expression of Sometimes ASD is overlooked or considered inappro- the syndrome varies with a child’s age and devel- priate for a child with Down syndrome due to cognitive opmental level. impairment. For instance, if a child has a high degree  Autism can co-exist with conditions such as mental of hyperactivity and impulsivity only the diagnosis retardation, seizure disorder, or Down syndrome. of ADHD may be considered. Children with many  Autism is a life-long condition. repetitive behaviors may only be regarded as having stereotypy The most commonly described movement disorder (SMD), which areas of concern for children with is common in individuals with ASD include: severe cognitive impairments.  Communication (using and un- Most parents agree that se- derstanding spoken words or vere behavior problems are signs), usually not easily fixed. Finding  Social skills (relating to people solutions for behavioral concerns and social circumstances), is one reason families seek help  Repetitive body movements or from physicians and behavior behavior patterns. specialists. Compared to other groups of children with cognitive Of course there is inconsistency in impairment, those with Down any of these areas in all children, syndrome, as a group, are less especially during early childhood. likely to have behavioral or psy- Children who have ASD may or chiatric disorders. When they may not exhibit all of these char- do, it is sometimes referred to acteristics at any one time nor as having a “dual-diagnosis.” It will they consistently demonstrate is important for professionals to their abilities across similar cir- consider the possibility of a dual-diagnosis (Down cumstances. Some of the variable characteristics of syndrome with a psychiatric condition such as ASD ASD we have commonly observed in children with or OCD) because: DS-ASD include: 1. It may be responsive to medication or behavioral  Unusual response to sensations (especially sounds, treatment, and lights, touch or pain), 2. A formal diagnosis may entitle the child to more  Food refusal (preferred textures or tastes), specialized and effective educational and interven-  Unusual play with toys and other objects, tion services.  Difficulty with changes in routine or familiar sur- If you think your child may have ASD disorder, share roundings, this before or during your evaluation. Don’t wait to  Little or no meaningful communication, see what might happen.  Disruptive behaviors (aggression, throwing tan- trums, or extreme non-compliance), Incidence  Hyperactivity, short attention, and impulsivity, Estimating the prevalence or occurrence of ASD disor-  Self-injurious behavior (skin picking, head hitting der among children and adults with Down syndrome or banging, eye-poking, or biting), is difficult. This is partly due to disagreement about  Sleep disturbances, and diagnostic criteria and incomplete documentation of cases over the years. Currently, estimates vary  History of developmental regression (esp. language between 1 and 10%. I believe that 5-7% is a more ac- and social skills). curate estimate. This is substantially higher than is Sometimes these characteristics are seen in other seen in the general population (.04%) and less than childhood disorders such as attention deficit hyper- other groups of children with mental retardation activity disorder or obsessive compulsive disorder. (20%). Apparently, the occurrence of trisomy 21 low- 10 Volume 3, Issue 5 & 6 Disability Solutions

A Look at What We Know

ers the threshold for the emergence of ASD in some children compared to those with Down syndrome children. This may be due to other genetic or other alone. We are presently evaluating other areas of the biological influences on brain development. brain, including the limbic system and all major cor- A review of the literature on this subject since 1979 tical subregions, to look for additional markers that reveals 36 reports of DS-ASD (24 children and 12 will distinguish children with DS-ASD from their peers adults). Of the 31 cases that include gender, an aston- with Down syndrome alone. ishing 28 individuals were males. The male-to-female ratio is much higher than the ratio seen for autism in Brain Chemistry and ASD the general population. Additionally, in reports that The neurochemistry (chemistry of the brain) of autism include cognitive level, most children tested were in is far from clear and very likely involves several differ- the severe range of cognitive impairment. ent chemical systems of the brain. This information Generally, the cause of ASD is poorly understood, provides the basis for medication trials to impact the whether or not it is associated with Down syndrome. way the brain works in order to elicit a change in be- There are some medical conditions in which ASD is havior. An analysis of neurochemistry in children with more common such as Fragile-X syndrome, other ASD alone has consistently identified involvement of chromosome anomalies, seizure disorder, and pre- at least two systems. natal or perinatal viral infections. Down syndrome should be included in this list of conditions. The 1. Dopamine: regulates movement, posture, attention, impact of a pre-existing medical condition such as and reward behaviors; and Down syndrome on the developing brain is probably 2. Serotonin: regulates mood, aggression, sleep, and a critical factor in the emergence of ASD disorder in feeding behaviors. a child. Additionally, opiates, which regulate mood, reward, Brain Development and ASD responses to stress, and perception of pain, may also be involved in some children. The development of the brain and how it functions is Detailed studies of brain chemistry in children different in some way in children with DS-ASD than with DS-ASD have not yet been done. However, our their peers with Down syndrome. Characterizing and clinical experience in using medications that modu- recording these differences in brain development late dopamine, serotonin or both systems has been through detailed evaluation of both groups of children favorable in some children with DS-ASD. will provide a better understanding of the situation and possible treatments for children with DS-ASD. A detailed analysis of the brain performed at au- How Do I Find Out? topsy or with magnetic resonance imaging (MRI) in children with autism shows involvement of several Obtaining an Evaluation different regions of the brain: If you suspect that your child with Down syndrome  The limbic system, which is important for regulating has some of the characteristics of ASD or any other emotional response, mood and memory, condition qualifying as a dual-diagnosis, it is impor-  The temporal lobes, which are important for hearing tant for him to be seen by someone with sufficient and normal processing of sounds, experience evaluating children with cognitive impair- ment—ideally Down syndrome in particular. Some of  The cerebellum, which coordinates motor move- the same symptoms which occur in DS-ASD are also ments and some cognitive operations, and seen in stereotypy movement disorder, major depres-  The corpus callosum, which connects the two hemi- sion, post-traumatic stress disorder, acute adjustment spheres of the cortex together. reactions, obsessive-compulsive disorder, anxiety At Kennedy Krieger Institute, we have conducted MRI disorder, or when children are exposed to extremely studies of 25 children with DS-ASD. The preliminary stressful and chaotic events or environments. results support the notion that the cerebellum and corpus callosum is different in appearance in these Continued on page 12 11 Disability Solutions September/October 1999 Down Syndrome and Autistic Spectrum Disorder: Continued from page 11 Sometimes when children with Down syndrome are Diagnostic Confusion experiencing medical problems that are hidden—such Problem: as earache, headache, toothache, sinusitis, gastritis, ulcer, pelvic pain, glaucoma, and so on—the situation Diagnostic confusion with other behavioral or psy- results in behaviors that may appear “autistic-like” chiatric conditions such as ADHD, OCD, or depres- such as self-injury, irritability, or aggressive behav- sion. iors. A comprehensive medical history and physical Result: examination is mandatory to rule out other reasons for the behavior. When cooperation is elusive, sedation or Parents may feel forced into demanding a referral anesthesia may be required. If so, use this “anesthe- for another medical evaluation at a Down syndrome sia time” effectively by scheduling as many specialty clinic or Child Development Center. This often is a examinations as are feasible at one session. considerable cost for families because of insurance In addition to the medical assessment, you will concerns. Many HMOs and PPOs will not refer out or be asked to help complete a checklist to determine take on part of the cost for evaluations outside of their whether or not your child has ASD. I use the Autism system. The same is true for educational evaluations. Behavior Checklist (ABC), but there are others that are Many school systems may be hesitant to provide ad- also used such as the Childhood Autism Rating Scale ditional, intensive, and costly services for kids with (CARS) and the Gilliam Autism Rating Scale (GARS). DS-ASD. The combination of frustration and lack of Each of these is completed either in an interview acceptance by professionals (medical and educational) with parents or done by parents before coming to the of the dual diagnosis may lead parents to abandon appointment. They are then scored and considered traditional services in favor of nontraditional solutions along with clinical observation to determine if your to their child’s medical and educational needs. This is child has ASD. not necessarily a bad thing. Individual, creative prob- lem-solving is a great asset when support is elusive. However, total withdrawal from “the system” may Obstacles to Diagnosing DS-ASD lead to feelings of abandonment and isolation, which makes it difficult for families to help their child and “If it looks like a duck, and it quacks like a duck... build the support systems needed to deal with stress. guess what?” There will be plenty of frustrating and stressful mo- ments in the future. Parents deserve support. Parents sometimes face unnecessary obstacles in seeking help for their children. Parents have shared Lack of Acceptance by Professionals several reasons demonstrating this. Some of the more common include: Problem: There is sometimes a lack of acceptance by profes- Failure to Recognize the Dual Diagnosis sionals that ASD can coexist in a child with Down syndrome who has cognitive impairment. They may Problem: feel an additional label is not necessary or accurate. Failure to recognize the dual diagnosis except in the Parents may be told, “This is part of ‘low functioning’ most severe cases. Down syndrome.” We now know this is incorrect. Children with DS-ASD are clearly distinguishable from children with Down syndrome alone or those who Result: have Down syndrome and severe cognitive impairment This is frustrating for everyone who is actively seeking when standardized diagnostic assessment tools such solutions for a child. If you are in this situation and as the ABC are used. feel that your concerns are not taken seriously, keep trying. The best advice is to trust your gut feeling re- garding your child. Eventually you will find someone willing to look at all the possibilities with you. 12 Volume 3, Issue 5 & 6 Disability Solutions

A Look at What We Know

Result: Parents become frustrated and may give up trying to What Does it Mean? obtain more specific medical treatment or behavioral intervention. Behavioral Findings Obtaining a diagnosis of DS-ASD is rarely helpful in Confusion in Parents understanding how ASD effects your child. It is com- plicated by the lack of information available, making Problem: it difficult to discern appropriate medical and educa- Lack of acceptance, understanding, awareness, or tional options. To determine what behaviors are most agreement on the part of parents or other family mem- common in DS-ASD we are conducting case-control bers, particularly of very young children, about what’s studies which randomly match (for gender and age) happening. Initial reactions by families and parents a child with DS-ASD with a child who has Down syn- vary considerably from, “This too shall pass” to “Why drome without ASD. These comparisons are based isn’t he doing as much as other kids with DS?” on the information obtained from the ABC together with a detailed developmental history and behavioral Result: observation. Through this process we have been able Parents in this situation may find themselves at to determine the following: odds with each other about the significance of their Children with DS-ASD were more likely to have: child’s behavior and what to do about it. As a result,  marriages are stressed, parenting relationships with History of developmental regression including loss other children are strained, and life is tough alto- of language and social skills, gether. Unfortunately, I have found that parents in  Poor communication skills (many children had no this situation almost universally withdraw from local meaningful speech or signing), Down syndrome support groups or other groups that  Self-injurious and disruptive behaviors (such as may provide support. There are a variety of reasons skin picking, biting, and head hitting or banging), for this including “the topics discussed don’t apply  Repetitive motor behaviors (such as grinding teeth, to my child,” It’s just too hard to see all those chil- hand flapping, and rocking), dren doing so much more than my child,” and “I feel  Unusual vocalizations (such as grunting, humming, like people think I’m a bad parent because of my and throaty noises), daughter’s behavior.”  Unusual sensory responsiveness (such as spinning, Ideally someone in the parent group would rec- staring at lights, or sensitivity to certain sounds), ognize this when it is happening and offer additional support instead of watching them withdraw. What is  Feeding problems, (such as food refusal or strong worrisome is that the very parents who are most in preference for specific textures), and need of support and assistance cannot or do not re-  Increased anxiety, irritability, difficulty with tran- ceive it within the context of their local parent group. sitions, hyperactivity, attention problems, and In fact, there may not be another parent in the group significant sleep disturbances. with a child who is similar because DS-ASD is uncom- Other observations include: mon and not easily shared.  Children with DS-ASD scored significantly higher It is critical that parents have an opportunity to than their peers with Down syndrome alone on all meet and learn from other parents whose children five subscales of the ABC: sensory function, social also have DS-ASD. Despite the underlying medical relating, body and object use, language use, and condition (trisomy 21), the neurobehavioral syndrome social skills. of ASD may mean that a support group for families of children with autism will be helpful as well. How-  Children with DS-ASD show less impairment in ever, because of the lack of acceptance or knowledge social relatedness than those with ASD only. about the dual diagnosis, these support groups can be equally daunting.

Continued on page 14 13 Disability Solutions September/October 1999 Down Syndrome and Autistic Spectrum Disorder:

Continued from page 13 larly in older children, for specific behaviors. This  Children with DS-ASD show more preoccupation is especially true if these behaviors interfere with with body movement and object use than children learning or socialization. While there is no cure or with ASD alone. remarkably effective treatment for Down syndrome  Children with DS-ASD scored higher on all five and autistic spectrum, certain “target behaviors” may subscales of the ABC than children with severe be responsive to medication. Some of these behaviors cognitive impairment alone. include:  Among children with Down syndrome only, even  Hyperactivity and poor attention, those with severe cognitive impairment do not al-  Irritability and anxiety, ways meet the criteria for ASD.  Sleep disturbance, The conclusion I draw from this data is children DS-  Explosive behaviors resulting in aggression/disrup- ASD are clearly distinguishable from both “typical” tion (can sometimes be reduced), children with Down syndrome and those with severe cognitive impairment (including children with Down  Rituals and repetitive behaviors (can sometimes be syndrome). Thus, it is probably incorrect to suggest reduced), and autistic-like behaviors are entirely due to lower cogni-  Self-injury (can sometimes be reduced). tive function. However, the fact that autistic features As you continue to take care of your child, make a and lower cognition are associated indicates there is point to take care of yourself and your family—in some shared determinant(s) that are common to both that order. You have a life and a family to consider. features (ASD and lower cognition) of the condition. Recognize that there is only so much time, energy Associated Medical Conditions and resources that you can put into this “project.” Of course there will be cycles, of good times and bad, There are questions about the possibility of similari- but if you can’t find some way to renew your emo- ties in the variety of medical conditions associated tional spirit, then “burn-out” is inevitable. There is a with Down syndrome in general in children with DS- higher rate of anxiety, sleep problems, lack of energy, ASD. To determine this we used the same matching depression, and failed or struggling marriages under scheme as described above. It is important to point out these circumstances. Learn to recognize your own dif- the number of matched pairs currently in our study ficulties and be honest with yourself and your spouse is quite small and, as a result, some of these findings about the need for help. Counseling and medication may not hold up as we examine more children. may go a long way in helping you to be at your best, DS/ASD children were more likely to have: for everyone’s sake.  Congenital heart disease and anatomical GI tract Conclusion anomalies,  Neurological findings,(i.e., seizures, dysfunctional Clearly there is a great deal to be learned about chil- swallow, severe hypotonia and motor delay), dren with Down syndrome who are dually diagnosed with autism spectrum disorder. In the meantime, it is  Opthamologic problems, essential for parents to educate themselves and others  Respiratory problems (i.e., pneumonia and sleep about this condition. Families must work on building apnea), and a team of health-care professionals, therapists, and  Increased total number of medical conditions. educators who are interested in working with their What Now? child to promote the best possible outcome. Research efforts must move beyond mere description to address After the Evaluation causation, early identification, and natural history. Specific markers in the development of the brain If your child has DS-ASD, obtaining the diagnosis which can distinguish DS-ASD from “typical” Down or label may be a relief of sorts. The addition of ASD syndrome and “typical” autism need to be sought; and brings new questions. From a medical perspective it the possible benefits of various treatments need to is important to consider use of medication, particu- 14 Volume 3, Issue 5 & 6 Disability Solutions

A Look at What We Know be more carefully documented. Realizing these goals Resource Organizations will take a very long time to accomplish and must be approached with a spirit of support, cooperation, and caring both for individual children and the larger Autism Society of America community of children with DS-ASD. 7910 Woodmont Avenue    Bethesda, MD 20814-3015 301/657-0881 www.autismsociety.org George T. Capone, M.D., is the Director of the Down Syndrome Clinic and Attending Physician on the National Association for Dual Diagnosis Neurobehavioral Unit at Kennedy Krieger Institute in 132 Fair Street Baltimore, Maryland. Kingston, NY 12401-4802 www.thenadd.org

Kennedy Krieger Institute References: Down Syndrome Clinic 1. Kent, L., Evans, J., Paul, M., and Sharp, M. “Comorbidity 707 N. Broadway of Autistic Spectrum Disorders in Children with Down Baltimore, MD 21205 Syndrome.” Developmental Medicine and Child Neurology referrals: 888/554-2080 41:153-158 (1999). 2. Howlin, P., Wing, L., and Gould, J. “The Recognition of Autism in Children with Down syndrome: Implications for Cincinnati Center of Developmental Intervention and Some Speculations About Pathology.” Disorders Developmental Medicine and Child Neurology 37:406-414 Down Syndrome Clinic (1995). 3333 Burnett 3. Ghaziuddin, M., Tsai, L., and Gahziuddin, N. “Autism in Cincinnati, OH 45208 Down’s Syndrome: Presentation and Diagnosis.” Journal of Intellectual Disability Research 36:449-456 (1992). 513/636-6755 4. Rapin, I., “Autism.” New England Journal of Medicine 33(2): 97-104 (1997). National Down Syndrome Society 5. Campbell, M., Schopler, E., Cueva, J., and Hallin, A. 666 Broadway “Treatment of Autistic Disorder.” Journal of the American New York, NY 10012 Academy of Child and Adolescent Psychiatry 35(2):134- 800/221-4602 143 (1996). www.ndss.org 6. Rogers, S. “Neuropsychology of Autism in Young Children and Its Implications for Early Intervention.” Mental Retar- dation and Developmental Disabilities Research Reviews National Down Syndrome Congress 4:104-112 (1998). 7000 Peachtree-Dunwoody Road, NE 7. Forness, S. and Kavale, K. “Autistic Children in School: Lake Ridge 400 Office Park The Role of the Pediatrician.” Pediatric Annals 13(4):319- Bldg #5 - Suite 100 328 (1984). Atlanta, GA 30328 800/604-9500 www.members.carol.net/~ndsc

15 Disability Solutions September/October 1999 Dual Diagnosis: The Importance of Diagnosis and Treatment

by Bonnie Patterson, M.D.

n the past, it was thought children with Down is finally made which helps them understand their syndrome who exhibited autistic behaviors were child’s differences. It also opens the door to investigat- Isimply exhibiting these behaviors secondary to se- ing and obtaining appropriate intervention services. vere or profound retardation. We now realize children It is critical for children with Down syndrome and with Down syndrome can also have true autism spec- autism spectrum disorder to be identified as early as trum disorder and that this occurrence is not rare. possible because of the impact on educational and Little has been written regarding the dual diagnosis therapeutic interventions, and in some cases the of Down syndrome and autistic spectrum disorder need for further medical assessments and treatments. (DS-ASD) and currently only 12 cases are reported There are many educational and therapeutic programs in the medical literature. that have been developed specifically for children with Because so little information is available about autism spectrum disorder, including Applied Behav- the incidence and diagnosis of DS-ASD, parents fre- ioral Analysis (ABA or Lovass), developmental social quently share with me the frustration they feel as they programs (Greenspan), sensory integration therapy, try to understand why their and picture exchange com- child is not developing in the munication systems (PECS) same way as other children with “It is critical for children (see resources, page 36). Down syndrome. Many relate a with Down syndrome Without a diagnosis of autis- specific age when their child’s and autistic spectrum tic spectrum, these strategies development either regressed will probably be overlooked for or slowed. These atypical pat- disorder to be identified a child with Down syndrome. terns of development are most as early as possible It is as important for a child often reported in the areas of with DS-ASD to access this language and behavior. Parents because of the impact on intervention, and for the fam- describe their child as becoming educational and therapeutic ily to know what information more withdrawn, obsessively interventions...” to research, as it would be attached to certain objects, for any other child with the engaging in repetitive or stereo- diagnosis of autistic spec- typic behaviors, not engaging in trum disorder. Additionally, imaginary play and losing language skills. These are there are some medical tests that may be beneficial all behaviors classically described in children with in further evaluating and choosing possible medical autism spectrum disorder. treatment for a child with autism. Although every Professionals are often reluctant to diagnose a child with the dual diagnosis of DS-ASD does not child who has Down syndrome with a second serious require all of the following, some may need blood lead developmental disorder such as autistic spectrum levels, chromosomes including DNA probe for fragile disorder. Many believe that the behaviors and atypical X, urine metabolic screen, MRI scan of the brain, or language development are related to severe or pro- prolonged EEG. found mental retardation they associate with Down It is important for the medical community to make syndrome or believe they are “protecting the parents” progress toward a better understanding of this dual by not giving a second diagnosis. Our experience has diagnosis. With information, we will be able to put been that the majority of children we see with autism some of the disputes regarding occurrence aside and spectrum disorder and Down syndrome are not se- focus on effective medical and educational interven- verely or profoundly mentally retarded, but function tions. For example, there are reports of increased in the moderate to severe range of cognitive delay. frequency of seizures and abnormal EEG findings in In addition, parents are relieved when the diagnosis children with autism. The current recommendation 16 Volume 3, Issue 5 & 6 Disability Solutions Diagnosis and Treatment is that prolonged EEG studies (23 hours) be done, strategies. particularly for those who have a history of language Early recognition and diagnosis of autism spec- loss or regression (6). With this in mind, a study trum disorder in children with Down syndrome has is currently underway at the Cincinnati Center for significant implications for a family’s understanding Developmental Disorders evaluating a group of 10 of their child’s needs in regards to therapeutic and children with DS-ASD with prolonged EEG’s. The educational interventions, as well as the need for result of the EEG determines whether or not we medical evaluations and treatments. Continuing should consider treatment with seizure medication. research is needed in the area of dual diagnosis to The use of these medications may improve language explore environmental and familial risk factors, MRI or behavior if a child with DS-ASD shows evidence of findings, biochemical changes, and the relationship abnormal electrical activity on the EEG. This could of the EEG abnormalities to autistic behaviors, par- be particularly important for children with Down ticularly in those children with a history of language syndrome and autistic spectrum, as the frequency of regression. With this research, we hope to gain a seizures has been reported to be greater than that of greater understanding of Down syndrome and autis- the general population (5-10%). The association be- tic spectrum disorder which will help reduce barriers tween autism and epilepsy is also high, with ranges to diagnosis and access to appropriate medical and reported from a low of 7% to a high of 42%. Prolonged educational interventions. EEG studies (23 hours) have been found to be better at identifying abnormalities in children with autism    over routine EEG studies. The current recommenda- tion for children with autism spectrum is for those Bonnie Patterson, M.D., is a developmental pediatrician with significant expressive and receptive language at the Cincinnati Center on Developmental Disabilities dysfunction, or a history of regression of language, to and the director of the Down Syndrome Clinic. She is receive a prolonged EEG study including a significant the co-chair person of the Down Syndrome Medical amount of sleep recording. It seems only appropriate Interest Group and a member of the Clinical Advisory that children with DS-ASD be evaluated in the same Board for the National Down Syndrome Society. way in order to determine if any abnormalities are detected, which could affect medical management References 1. Bregman J., Vlkmar F.R., “Autistic Social Dysfunction and Down Syndrome.” Journal of American Academy of child and Adolexcent Psychiatry 27:440-441 (1988). 2. Ghaziuddin, M., Tsai L., and Gahziuddin, N. “autism in down’s Syndrome: Presentation and Diagnosis.” Journal of Intellectual Disability Research 36:449-56 (1992). 3. Howlin P., Wing L., Gould J., “The Recognition of Au- tism in Chidlren with Down Synrome–Implications for Intervention and Some Speculations About Pathology.” Developmental Medicine and child Neurology 37:398-414 (1995). 4. Kent l., Perry K., Evans J., “Autism in Down’s Syndrome: Three Case Reports.” Autism 2(3):259-67 (1998). 5. Wakabayashi I. “A Case of Infantile Autism Associated with Down’s Syndrome.” Journal of Autism and Develop- mental Disorders 9:31-36 (1979). 6. Tuchman R., Rapin I. “Regressoin in Pervasive Develop- mental Disorders: Seizures and Epiliptiform Electroen- cephalogram Correlates.” Pediatrics 99:560-66 (1997). 7. Stafstrom C. “Epilepsy in Down Syndrome: Clinical As- pects and Possible Mechanisms.” American Journal on Peter Ben Paul shares a moment with Dad. Mental Retardation 98:12-26 (1993).

17 Disability Solutions September/October 1999 Language & Communication: The Key is Effectiveness

by Julie Bierman Gee, M.S.,CCC-SLP

am is a 14-year-old high school student who atherine is an active 5-year-old girl who, like carries a dual diagnosis of Down syndrome and C Sam, also has a dual diagnosis of DS-ASD. Sautistic spectrum disorder DS-ASD. At home, he When she was in early intervention, her communica- shares many of his wants and needs by making differ- tion services focused on using total communication, ent vocalizations, which his mother understands and a method of combining speech and sign language interprets for him. At school, Sam is less successful to encourage communication. Catherine is able to communicating, and often is unable to get his point communicate her wants and needs through sign ap- across. To date, Sam’s speech and language services proximations. She also understands more signs than have been centered primarily on production of speech she is able to make. Using sign language has allowed and improvement of oral motor skills, with infrequent Catherine to communicate effectively with people and inconsistent attempts at using pictures. Sam is other than her family. beginning to show frustration at school by acting out physically and not following directions. As he gets older, his mother is growing weary of being his in- terpreter. She realizes that he needs a more effective way to interact with the world around him because she cannot always be present.

hile Sam and Catherine both have DS-ASD, they are examples of children whose very different types of communication intervention yielded very different results. Clearly, no two children with Down W syndrome and autistic spectrum disorder are exactly alike, and no two approaches to therapy will be exactly the same. All children with these diagnoses do, however, share unique speech, language, and com- munication needs. As you meet therapists, teachers, and other professionals, you may become discouraged by the things it seems your child can’t do. What’s important to remember, though, is that all children can learn to communicate. That communication may take different forms for different children: your child might use sign language, while his classmate uses an augmentative communication device. However, creating an intervention program that focuses on communication is sure to let you and your child see positive effects. This article will offer you information about things to consider as you begin intervention, and give you ideas about ways to begin to focus on communication with your child. Implications for Therapy The good news is that myriad options exist to help your child learn how to communicate. Even better news is with a dual diagnosis of Down syndrome and autistic spectrum disorder, communication intervention through the school for your child is almost guaranteed. This is because children with Down syndrome alone often “age out” of speech and language services in the school setting. This happens when a child is determined to be eligible for special education services under the label of mental retardation. When their language abilities reach a level that is seen as equal to their level of cognitive skill, they are often discharged from service, based on reports that they have reached their communicative potential. In contrast, children with autistic spectrum disorders typically continue to need support using language to meet their needs as well as to ap- ply the language and communication skills they learn to new or unfamiliar situations. Because of this, the majority of public school settings provide speech or communication-related services to children with autism throughout their school careers. If your child is determined to be eligible under both categories she is likely

18 Volume 3, Issue 5 & 6 Disability Solutions Language & Communication

to continue to qualify for speech related services and cally, and less painfully. By remembering this, you’ll support such as augmentative communication sys- be able to work with her therapist to find a method tems for as long as she is in school. that’s most effective for her. Learning to communicate will look different for Regardless of the method of communication you each child as options are chosen that build on your choose for your child (such as signing, pictures sys- child’s strengths. Focusing on the process of com- tems, or voice output), focusing on communication, munication, rather than on the form communication rather than speech production alone, increases your takes, will yield many positive outcomes for you and child’s opportunities to participate in meaningful, your child. An intervention program with a focus ex- communicative interactions. She will express her clusively on the development of speech and related choices and exert environmental control in ways that skills limits the opportunities that your child will actively involve her. These experiences expose her have to communicate independently. Excluding other to interactions she can use to increase her level of techniques to focus primarily on speech creates a language comprehension. In addition, ensuring that situation where other options may be ignored. Includ- your child has a way to independently communicate ing techniques that are motivating and effective for her wants and needs increases her level of functional your child such as total communication (simultane- independence, by decreasing her reliance on you as ous speech and signing), low technology augmenta- her sole interpreter. In turn, this gives you a break. tive communication supports (e.g., picture symbols, communication displays), and higher technology General Guidelines Intervention augmentative communication devices greatly enhance your child’s communicative potential. Developmental As your child begins therapy, keep the following gen- milestones such as “first sign” or “first point to a pic- eral guidelines in mind. While a private therapist is ture” aren’t likely to be found in child development likely to have more time to spend with you and may manuals. However, attention to these types of early involve you more directly in your child’s interven- communication signals is just as important, if not tion, the following guidelines apply to therapy in all more so, than attention to milestones such as “child’s intervention settings. first word.” It is communication in any form (not just You are an integral part of the process. speech) that allows your child to begin to express herself with clarity and independence. In turn, that Communication does not occur in a vacuum. It is communicative independence furthers her intellectual critical that the techniques or methods used with your and social development. child during sessions are ones that can be carried over Your child’s ability to communicate is a vital part into her home, classroom setting, and community. To of her life. It is essential to remember this as you make sure this carryover occurs, you must be an ac- advocate for your child. Communication is the key to tive participant in the process. If you have questions everything in life. Without appropriate and effective about why your therapist chose a particular sign or language and communication skills or tools avail- symbol to teach or a particular strategy to use, ask. able your child may become a passive participant Don’t be afraid to speak up if you think a particular in the world around her. She may be limited to the recommendation is not right for your child, or if there choices that others make for her based on what may are other communication skills you want your child be faulty interpretations of her communicative at- to learn first. You and your therapist must work to- tempts. Over time, because she lacks control over gether by listening to each other and respecting each these interactions, a feeling of helplessness emerges. other’s knowledge. A good therapist will listen to you Why bother trying? In educational literature, this is and respect your knowledge of your child’s needs called learned helplessness. Some children even stop outside of the therapy room just as you respect her their attempts at communicative signaling because knowledge and ability about communication strate- the choices are meaningless or they are ineffective or gies. Together you will work to develop communication unsuccessful at using the communication tool. Oth- objectives that fit your child’s developmental abilities ers become frustrated and resort to physical means and communication needs. such as hitting, kicking, or biting as their main way to communicate—unpleasant, but it works. Remember Continued on page 20 your child can learn to communicate more systemati- 19 Disability Solutions September/October 1999 Language and Communication

Continued from page 19

The “look” of your child’s communication Useful Early Therapeutic Techniques intervention may change over time. Regardless of the method of communication interven- As your child grows and develops, her communi- tion that you choose for your child, one of the first cation needs will change, and she will learn new goals for speech-language therapy should be im- skills. Because of this, the form of communication proving her ability to clearly express communicative you begin with may not be the same one you use intent. Demonstrating communicative intent involves several years down the road. For example, while producing a communicative signal that is directed to- total communication is a common early intervention ward a specific person to achieve a specific objective. for children with DS-ASD, you may find that you Here are suggestions to enhance your child’s develop- are able to add methods such as picture symbols or ment of this important communicative skill: communication displays. It isn’t necessary to rely on Follow Your Child’s Lead any single method of communication for your child. All of us communicate using a variety of techniques Developing clear communicative intent requires that (speech, facial expression, pointing, eye contact, body your child be able to establish and maintain joint language, etc.). Your child will use a combination of attention, a state in which you and she focus simul- methods (signing, vocalization, picture pointing, de- taneously (or jointly) on the same object. One com- vice use) to communicate, too. mon frustration expressed by parents, teachers, and therapists of children with Down syndrome and ASD All members of your child’s intervention is their child’s or student’s reduced attention span, team must work together to be effective. and need to shift frequently from one activity to the next. A natural tendency in this situation is to “force” Often, children with Down syndrome and autistic your child to maintain attention to a single activity or spectrum disorder work with a variety of profession- toy, or to redirect her shifting attention back to the als at school and privately. If your child receives activity or toy she started with. Surprisingly, results therapeutic intervention both in and out of her school of a variety of research studies have shown that it setting, it is crucial that everyone involved commu- is more effective to follow the shifting focus of your nicate with each other. While this type of coordina- child’s attention. Following your child’s lead increases tion is important for all disciplines, it is essential in her understanding of words and their relationship communication intervention. If your child is using to the world around her (i.e., her receptive language communication displays with a therapist outside of skill). In order to help your child develop the ability to school, but does not have access to picture supports achieve and maintain a state of joint attention, your in her classroom, she will make limited progress due chances are best if you let your child take the lead, to lack of consistency in her programming. In a situ- while you find ways to engage her interactively with ation like this, she will be confused and frustrated whatever object captures her interest. about communication in general. Who wouldn’t be? For example, there are a variety of interesting, The rules for communicating must be consistent engaging, and developmentally appropriate toys you everywhere. Encourage all therapists involved with might use while playing with your child to introduce your child to talk with each other and with you. If the concept of “in” and “out.” She may reject all of meetings in person aren’t possible, create a phone list these options in favor of your purse—an object you of key people involved in your child’s education and initially deem slightly less appropriate. If you follow care, or set up a “communication log” in a binder that your child’s lead, however, capitalizing on her inter- travels between home, school, and outside therapy est in your purse, you’re likely to help her achieve appointments. If you use a communication log, be joint attention. You might model spoken and signed sure that you write messages in it, too, so that you phrases such as “tissues out,” “lipstick out,” “keys can give your therapists feedback about your child’s out,” “pen out” and maximize her opportunity for progress at home and let them know about any new attaching meaning onto a single word (“out”). While developments or additional concerns. you always have to be sure that the objects your child chooses for play are safe, tolerating a healthy degree

20 Volume 3, Issue 5 & 6 Disability Solutions Language and Communication

of flexibility and a willingness to change plans as your learn to initiate clear communicative signals. child’s interests dictate will increase her chances for improving language comprehension skill. Use Portion Control Similar to “sabotage,” you can encourage your child to practice initiating communicative interactions by “Sabotage” Some Situations offering smaller portions of food or shortening the Although it sounds as though it runs counter to what length of time she plays with a favorite toy. The ob- any good parent might do, setting up some situations jective is not to deprive her of food or play, but to set in which your child is bound to be unsuccessful actu- up opportunities for her to communicate with you ally serves a positive purpose in teaching communica- or others. tive intent. For example, if your child is playing with For example, during snack-time give your child a favorite wind-up toy, you can interrupt her activity one or two goldfish crackers at a time, instead of the briefly by placing the toy inside a tightly sealed, trans- entire package. Once she has eaten the crackers parent plastic jar (old peanut butter jars work well for before her, show your child how to request more to this purpose). Most likely, she will be unable to open eat if she does not initiate this request independently. this jar independently, and will try a variety of means Depending on the method of communication you are (including shaking, banging, biting, or rolling the jar) using, this may mean that you model the word and/ to try to get the toy. If unsuccessful in these attempts, or sign “more,” that you touch a picture of crackers, a child who has developed clear communicative intent or that you push a key on a simple communication will seek out someone who can help, and signal the device that speaks a request for “more.” need for help by vocalizing, signing, or handing over Another example of this is when your daughter is the jar for assistance. If your child is learning to interested in watching a favorite video on the VCR. Sit ask for help, using sabotage in this way gives you an with her and occasionally pause or stop the movie she excellent opportunity to model clear communicative is watching. When you do, if she does not signal you signaling. In this case, you might hold your child’s to start the movie independently, model a signal that hands in your own and shape them into the sign for would enable her to make the movie continue. Using “HELP.” (Similar opportunities can be created by this strategy requires a little patience because it dis- keeping some of your child’s favorite toys out of reach, rupts the routine flow of interactions everyone expects. so she has no choice but to signal you in some way if However, structuring your child’s environment in a she wants to gain access to a preferred toy.) Creating way that creates a need for initiating communication situations in which your child will require assistance is an essential component that, over time, increases from you builds in opportunities for her to begin to her independent functional communication skills and sense of control over the world around her. Build in Choices As mentioned earlier, when children do not have a way to meaningfully participate in interactions, there is a risk they will become passive participants in the world around them. They fail to develop a strong sense that they can make choices to make things happen in their life. Providing your child with choices within activities and throughout her day will prevent this and increase her sense of communicative power and environmental control. Choice-making opportuni- ties look different depending on the method of com- munication being used, but the process of offering your child a choice remains the same. If your child recognizes packaging from preferred food items, you Continued on page 22 21 Disability Solutions September/October 1999 Language and Communication

Continued from page 21 tivating a communication device, your child will be communicating with you and with the world around her, in her own way, and taking positive steps toward maximizing her level of independence. There are no words to express the joy you will feel as you watch your child’s communicative potential increase. Maybe just a hearty “thumbs-up” sign will do.

  

Julie Bierman Gee is a speech-language pathologist who was a member of the Down Syndrome Clinic team at the Kennedy Krieger Institute in Baltimore, Maryland from 1995 – 1998. Presently, she is the Assistant Di- rector of The Learning Center at the Boys’ Latin School Snack choices for refrigerator. Choice cards of Maryland, and in private practice. are inside clear business card size pockets with adhesive backs. References can use these to offer her a choice of snacks. In this 1. Coggins, T.E. and Stoel-Gammon, C. “Clarification Strat- case, glue empty packaging from two favorite foods to egies Used by Four Down Syndrome Children for Main- a piece of cardboard and attach the cardboard to the taining Normal Conversational Interaction.” Education front of the refrigerator using velcro dots or magnet and Training of the Mentally Retarded 17:65-67 (1992). strips. When snack time comes, encourage your child 2. Cunningham, C. Down Syndrome: An Introduction for Par- ents. Cambridge, Massachusetts, Published by Brookline to touch or point to the package that represents the Books,1987. food she wants to eat. A similar procedure could be 3. Fowler, A. “Determinants of Language Growth in Children used with photographs of preferred foods, individual with Down Syndrome.” In Nadel (ed), The Psychobiology picture symbols (e.g., Mayer-Johnson symbols), or of Down syndrome. pp 217-245. Published by MIT Press, symbols on a communication display or communica- 1988. tion device, depending on your child’s need. Regard- 4. Kumin, L.Communication Skills in Children With Down less of the method of communication you are using Syndrome: A Guide for Parents. Published by Woodbine with your child, the goal is to encourage her to express House, 1994. her own wants and needs, thereby teaching her that 5. Manolson, A. It Takes Two To Talk: A Parent’s Guide to communication is a tool she can use to exert control Helping Children Communicate. Published by The Hanen on the world around her. Centre, 1992. 6. Miller, J. “Language and Communication Characteristics Closing Thoughts of Children with Down Syndrome.” In S. Pueschel, C. Parenting any child is a challenge, full of highs and Tingey, J. Rynders, A. Crocker, and D. Crutcher (eds.), lows. Parenting a child who is dually diagnosed with New perspectives on Down syndrome (168 – 198). Pub- Down syndrome and autistic spectrum disorder brings lished by MIT Press, 1987. with it its own set of challenges. Although many 7. Miller, J. “Facilitating Speech and Language Develop- may focus on the things that your child can’t do, or ment.” In C. Tingey (ed.), Down Syndrome: A Resource Handbook. Published by College Hill Press, 1988. on the skills that your child won’t achieve because of her disability, remember that your child can and 8. Ostrosky, M.M. and Kaiser, A.P. (1991). “Preschool Classroom Environments That Promote Communication.” will communicate. Keeping the focus on the process Teaching Exceptional Children Summer:6-10 (1991). of communication, rather than on the form that it 9. Stoel-Gammon, C. “Down Syndrome: Effects on Language takes, will allow you to rejoice over each of your child’s Development.”. ASHA, September: 42 – 44 (1990). important communicative achievements. Whether she is signing, pointing, gesturing, vocalizing, or ac- 22 Volume 3, Issue 5 & 6 Disability Solutions

Gross Motor Development in Children with Down Syndrome and Autistic Spectrum Disorder: Clinic Observations

by Patricia C. Winders, PT

s a part of my work at Kennedy Krieger down a ramp, he found it frightening. He wanted hand Institute’s Down Syndrome Clinic, I have seen support and moved very slowly. To make things worse, A17 children with Down syndrome and autistic the ramp at the clinic has black non-skid strips, which spectrum disorder (DS-ASD). Of these 17, I only saw he found visually confusing, and he did not like the 8 enough to observe their gross motor development. feel of them on his feet. In addition, to walk down a The others ranged in age from 4.5 to 16 years. I have one-inch curb Scotty slid his foot off the edge to feel for noticed some similarities among the children I have the floor before stepping down. Scotty is an example seen, but because there are so few, I am not certain of an observer. these observations are true for all children with DS- All of the children with DS-ASD wanted to walk at ASD. a slower pace than I asked and resisted moving too Based on the additional diagnosis of autistic quickly. To limit how far we went, they sat down to spectrum disorder, you might expect children who stop. They needed motivation to continue walking. have DS-ASD to be slower in developing gross motor When I gave them my hand, they were open to walking skills. This does not seem to be the case. In my small more quickly and frequently smiled at me. This told sample, children with DS-ASD did seem to follow the me they had the energy to walk faster and farther, but usual patterns of development seen in children with needed hand support as encouragement to try. Down syndrome. There also did not appear to be any It is important to understand and respect your regression in gross motor development with the onset Continued on page 24 of autistic spectrum, though it is seen in other areas of development. However, children with DS-ASD do seem to be slower to master the more advanced motor skills such as walking down stairs, alternating feet, or jumping. Children with Down syndrome characteristically have one of two temperaments. Temperament is the characteristic way a child thinks, behaves, and reacts when learning motor skills. The first temperament is motor driven: children who love to move and take risks physically. The second group are observers: children who prefer to be stationary, observe their surround- ings, and like to be careful and in control. All of the children I have seen with DS-ASD are clearly observ- ers. They prefer being stationary to moving and they tend to be cautious rather than being a risk-taker. Participating in new motor activities, or attempting to do them, was scary for them. For example, when I asked Scotty to walk up and Madison and Alison Duffey share a hug 23 Disability Solutions September/October 1999 Gross Motor Development: Clinic Observations

Continued from page 23

to parents and professionals. We need to understand child’s temperament as well as other factors such as how children with DS-ASD perceive and react to life sensory issues your child may have because of DS- experiences so we can interact with them in a way that ASD. For instance, children with DS-ASD are often respects their preferences. They will be, like anyone, overwhelmed by things going on around them such more open to new experiences if they are presented in as loud noises, children crying, or a lot of activity. a way that is acceptable and not frightening. They often do better in familiar surroundings or in situations that have some routine. This means in a clinic or school setting, children with DS-ASD may    become upset because the environment is unfamiliar and they are bombarded with new experiences and Patricia C. Winders, P.T., is a physical therapist who stimuli. Madison is an example of a child who prefers has a special interest in children with Down syndrome. a familiar environment in which she feels she has She is currently the senior Physical Therapist for the some control. When she came to clinic there were Down Syndrome Clinic at Kennedy Krieger Institute many new skills for her to try. The clinic was full of and author of the book, Gross Motor Skills in Children sounds and commotion that are usual for a clinic, with Down Syndrome: A Guide for Parents and but were overwhelming and new to her. Her mother Professionals. She also serves on the Professional and I thought a less busy area would be best, which Advisory Board of the National Down Syndrome is where we have the balance beam. Madison was Congress and the Clinical Advisory Board of the afraid to try, so her mother did it with her. During the National Down Syndrome Society. session she resisted participating, but she watched out of the corner of her eye. At the end of the session References: when we were discussing a home program for her, Madison initiated practicing walking on the balance  Winders, P. Gross Motor Skills in Children with Down Syn- beam on her own and learned to do it independently. drome: A Guide for Parents and Professionals. Woodbine House, 1997. She demonstrated that she would try new skills if she could try them on her own terms at her own pace. It was important that we did not impose ourselves in the process because that would upset and scare her. The way activities are set up for Madison needs to be just right to get the best performance. Children with DS-ASD often have sensory needs (see page 32). I am surprised by how many children with DS-ASD have a great love for swimming and water activities. One parent said when her child is swimming, he is in constant motion, has great endurance, and is highly motivated to participate. Another said her child loves to swim to the bottom of the pool and pick up pennies or pool toys, can hold his breath for 30 seconds, and swims using a dog Peter Ben Paul practices his swimming. paddle stroke. Another mother reports that her child learned the back stroke and another child loved just floating on the water. Even though these observations are based on a few children, they do suggest that similarities exist in children with DS-ASD. Gathering more observational data may provide additional clues that will be useful

24 Volume 3, Issue 5 & 6 Disability Solutions

Changing Behavior... & Teaching New Skills

by Naomi Swiezy, Ph.D.

aking your child to a clinic for an evaluation to improve behavior-related problems without con- Tis an intimidating process. Often a variety of ducting a formalized assessment. These strategies diagnoses or labels are discussed and considered, will improve your child’s behavior regardless of the confusing the big picture you have of your child. You specific motivation behind them. However, we first leave with one question: “Now what do I do about need to look at some general facts about children it?” This article will address this issue by presenting with Down syndrome and autistic spectrum disorder practical tips for managing your child’s inappropri- (Ds-ASD) that form the basis for working effectively ate behaviors while also teaching some appropriate with your child: behaviors and alternative skills.  Children with DS-ASD do not misbehave because they Parents of children with Down syndrome and au- are mean-spirited or obstinate. tistic spectrum disorder (DS-ASD) are especially in need of these tips because there is so little informa- All behaviors serve a purpose. That purpose may tion available about this dual diagnosis for parents be to communicate wants and needs. Particularly or professionals. As parents, you become comfortable children who are nonverbal or just learning to com- accommodating your child’s learning style based on municate will communicate in whatever method is information about Down syndrome and your own most effective and successful in getting what they experiences. Then the latter diagnosis, autistic spec- want, whether it is appropriate or not. trum disorder, is superimposed on the first. At this  Children with DS-ASD can learn. point many parents are overwhelmed. They feel as Learning may take longer and you may need to though all hope for modification is lost. However, if use different teaching strategies that are more ex- you approach your child’s behavioral difficulties that plicit and direct than for other children, but they are often associated with autistic spectrum from a sys- do learn. tematic, behavioral perspective, you will feel renewed  Children with DS-ASD have three major areas of concern: hope for not only behavioral management, but also communication, socialization, and interests or activi- for skill development. ties. One methodology that has proven effective for chil- dren with autistic spectrum disorders, including those A child with DS-ASD may or may not have a differ- with Down syndrome, is applied behavioral analysis ent amount of language, socialization, and leisure or ABA approaches. ABA approaches are based on behaviors from other children her same age. What the idea that we know when children misbehave, they is distinct is the way interactions vary from what often have some motivation to do so. We also know is expected from other children their same age and children learn from their environments and adapt developmental ability, particularly in the area of their behavior to gain access to what motivates them communication, socialization, and activities. the most. What becomes confusing is that each child  Common behavior problems such as aggression, tan- is motivated by different factors and sometimes more trums, and “noncompliance” are not part of DS-ASD. than one factor at a time. To address this, ABA uses For instance, it is not necessary for a child to have systematic and empirical ways to assess the indi- these behaviors to meet diagnostic criteria for the vidual motivational factors of each child. With this DS-ASD. However, children with DS-ASD tend to information, individual programs or plans are created respond with aggression, tantrums, or “noncompli- addressing both what happens before the behavior as ant” behavior as a way of communicating a frus- well as the consequences for the behavior itself. tration or need. The behaviors are the result of the There are several general guidelines you can use Continued on page 26 25 Disability Solutions September/October 1999 Changing Behavior...

Continued from page 25

syndrome, not a symptom of it. Some suggestions  Change activities often and always try to end with suc- regarding how to respond to these behaviors are cess. discussed later in this article. Just as it is important to set reasonable expecta-  A comprehensive, individualized program is the most tions, it is important to know when and how to end effective way to affect behavior. a teaching session or change activities. When you A comprehensive program will not only address are teaching your child a new skill, take a break consequences for inappropriate behaviors, but also before she becomes fatigued or frustrated and focus on training appropriate alternatives such as misbehavior arises. If possible end the activity at functional communication and play skills. If you a point where she has achieved some success. As seek only to reduce inappropriate behavior, you may much as possible, plan to end any specific teaching be decreasing the only effective form of communi- time on a positive note. This will build your child’s cation your child has. It is as important to teach a positive feelings about her abilities, and yours too. child what to do as well as what not to do. Consistently working until she is fatigued is frus- trating for everyone; she feels she has lost control Helping Your Child Achieve Her Potential of her situation and will act out accordingly.  Use things your child enjoys as reinforcement. The most effective approach to shaping appropriate When your child has done something that you behavior for children with DS-ASD is to create op- want to encourage, it’s important she sees your portunities in the environment for the behavior you response as a worthwhile reward. Keep in mind want to occur. It is equally important to respond to many children with DS-ASD may take particular inappropriate behaviors with effective management pleasure from some things that others would not strategies. Below are some general guidelines that find particularly reinforcing or gain pleasure from. address both of these angles. If you are overwhelmed That’s OK. What is important is that your child or faced with behaviors that are very difficult or sees the reward as a reinforcement for her behavior pervasive in nature, please consult a trained behav- or work that she has done. ioral specialist who is familiar with ABA strategies.  Allow choices whenever possible. A trained ABA specialist will work with you and your If your child does not feel she has control over her family to build specific recommendations and plans environment, she will be frustrated (and misbehave) for your child. as a result. Provide the illusion of control by giving her choices regarding aspects of the task without Environmental Controls lowering your expectations. For example, if you  Do not set expectations too low. would like her to sit down, you can say, “you need Your child is capable of learning. However, she to sit—do you want to sit in the big chair or the may learn many essential skills such as func- little chair,” or “you need to get dressed—do you tional communication, toileting, social skills, play want to put on your pants or shirt first?” and engagement more effectively by using explicit  Incorporate structure and routine into the environment. teaching than by picking the skills up naturally. Children with DS-ASD often do not pick up on Regardless, your child will develop skills. Expect vague cues that others do to detect changes in progress and growth. rules, expectations, or events. Therefore, building  Do not set expectations too high. predictability through structure and routine en- Set goals that are realistic. It helps to break tasks courages appropriate responses and increases the down into separate steps that you prompt and chance of success while decreasing frustration and respond to independently. This encourages suc- resulting inappropriate behaviors. cess and reduces the stress or frustration and, ultimately, behaviors that arise when expectations are too high.

26 Volume 3, Issue 5 & 6 Disability Solutions ...& Teaching New Skills

look at teaching your child what it is you would like them to do. Using Prompts to Teach New Skills Children with Ds-ASD may do better using specific teaching methods for new tasks. Your child must understand the request, what action to take to fol- low the direction, and then do those things. To do this, your child may need a variety of cues (visual, verbal, and physical) for her to understand and then  Plan ahead for transitions. follow-through with action. In addition, her interest Children with DS-ASD have difficulty with changes in repetitive or other behaviors may interfere with or new activities. You can help your child by al- her ability to follow your direction. Teaching your lowing for adequate time and using prompts that child to follow simple commands is a basic tool for are effective for your child about the change as it managing your child’s behavior. If your child is not is about to occur. This may mean specific verbal attentive or receptive to your demands then this will cues, a visual schedule, or physical cues (a touch limit your child’s ability to learn more adaptive ways or gathering specific items) that communicate what of responding. is coming next. One way to present new directions and teach the  Make eye contact. requested response is called guided compliance pro- Children with DS-ASD may not pick up on verbal cedures. This method is effective with gaining compli- cues even though they understand the request or ance in most cases. There are three basic steps to comment. Achieving eye contact in any interaction, the procedure: spoken or visual, will increase the chance your Verbal prompt: Give your child a clear instruction child is attending to the interaction. and wait five seconds. If she follows your direction  Be as concrete as possible. (complies), praise her in a manner that specifically and concisely details what she did well. (e.g., state Using abstract ideas, analogies, exaggerations, or “That’s good for…..” and insert the task completed). If sarcasm may only serve to confuse your child. She she does not comply, move to the next step: a gestural may take your comments literally or thoroughly and verbal prompt. misunderstand. Keep your comments simple, clear, and concise to encourage her understanding. For Gestural prompt: Show your child the exact response example, give short, direct, instructions: “Alice, you desire. As soon as you complete the task, return turn off the T.V. “ Then follow the guided compliance things, or yourself, so they are exactly the same as procedure described below. This will be more effec- before you gave the prompt. Tell her, “now you do it.” tive than saying, “Why are you watching T.V. when Wait five seconds without providing any other cues. If you’re supposed to be getting ready for school?” she complies, praise her specifically for her actions. If  Use more than verbal instruction. she does not comply, move to the next step: a verbal Use a combination of verbal, visual, modeled, and prompt with physical prompt follow-through. physical prompts to get your point across. Physical prompt: Take your child hand-over-hand  Be consistent in every way. through the entire response as you say, “you need to Your child will be most successful when the en- (repeat instruction).”No praise is issued if you must vironment is predictable in terms of structure, utilize this step. routines, and expectations. Important Pointers: Use these ideas and methods to set the stage for your child’s success and encourage appropriate behavior.  The basic premise behind this procedure is that It takes planning, but it is an important part of shap- sometimes your child may not be attentive, may ing your child’s behavior. Once this is done, take a Continued on page 28 27 Disability Solutions September/October 1999 Changing Behavior...

Continued from page 27  not hear you, or may not understand what is being Large tasks, such as cleaning her room, are best asked of her. The middle step is added to provide broken into several smaller tasks for better success. the benefit of the doubt. Even if you are convinced This presents more opportunities for praise and is that these things are not occurring, attempt this reasonable for everyone if she needs gestural or strategy and observe behavioral change. You will physical prompts. learn more about your child in the process.  Do not give an instruction unless you are willing  The timing of 5 seconds between each step allows to provide follow through. Consistency in follow- for some opportunity for compliance and keeps through to the gestural or physical prompt as the pace moving. However, for some children, this needed is more important than giving the instruc- processing time is not long enough and the time tion alone. interval may be expanded to more like 10 seconds.  Set up situations so your child earns more atten- If the interval is too much longer, the procedure is tion for compliance than for noncompliance. not as smooth and allows too much for diversions  Misbehavior during the three-step procedure and task evasion. should not allow escape from the task—rather,  The way you say things when talking to your child this behavior should be ignored and the sequence is very important. Your child is more likely to do continued. what you ask if you avoid some common pitfalls of giving instruction. These include: giving long or Behavior Management Strategies multiple requests at one time, providing vague re- Understanding what motivates your child’s behavior quests such as “Be a good girl,” issuing questions and deciding how to approach it can be a daunting rather than statements, repeating instructions, task. Although a formal, functional assessment is the giving instructions when there is not enough time most thorough method, there are some general and or energy to follow through, and failing to achieve effective strategies to consider as a starting point. It is eye contact. Use one-step, concrete instructions as important to individualize them for your child. Some much as possible. of these techniques, such as positive reinforcement  When using the physical prompt, it is important to and planned ignoring, are straightforward and intui- demonstrate the exact response you want. This is tive in theory, but will prove to be quite difficult to where you are teaching your child what is expected implement. Therefore, remember to set reasonable of her. It is important to teach it correctly the first expectations for yourself and your child and seek the time. support of a trained professional.  When using the physical prompt, it is important to be sure that your child is fully involved in the task Differential Responding and is not just loosely held while you complete the Children typically enjoy receiving attention. If they task. That is, even if the task may be completed do not receive enough positive attention for their with one hand, if physical guidance is necessitated, good behaviors, they will often resort to behavior that then you should use hand-over-hand from behind results in negative forms of attention (e.g., yelling, the child and guide both hands. nagging, “time out”). They would prefer to receive  Initially, you may want to practice this prompt se- this negative attention than to do without attention quence within the context of one specific task (e.g., all together. Over time, they learn which actions are dressing, eating). That way, you can practice the the most effective in getting a response—positive or sequence in a natural, time-limited situation and negative. This is called differential responding. your child will master a new skill that makes life a It is important to show your child more attention little easier. for acting appropriately than for acting inappropri- ately. This will motivate her to continue with posi-  Establish a standard schedule and routines for tive behaviors. When used along with procedures to your child. The more predictability your child has reduce inappropriate behaviors, such as ignoring (see in her day, the less often you will need to guide her below), it will encourage her to discriminate which through specific tasks. behaviors will gain approval. It is important for chil- 28 Volume 3, Issue 5 & 6 Disability Solutions ...& Teaching New Skills

dren to learn that only appropriate behavior receives with positive attention after a negative behavior. a response. This helps her discriminate between the behavior This makes sense to most people. When your child being rewarded as the most recent positive behavior engages in appropriate behavior, she should receive rather than a previous misbehavior. a positive and heightened response; when she mis-  Give the type of attention that your child enjoys. behaves, attention should be limited. Unfortunately, Children with DS-ASD find different things pleasur- it is natural to respond oppositely to what is effective able than other children. Make note of the type of and aggravate the situation. That is, when your child attention your child enjoys such as tickles, hugs, or acts appropriately, you (the parent or teacher) tend to a specific touch. It is important that the attention ignore her good behavior fearing that if you respond you give to reward appropriate behavior is positive it will “rock the boat.” Conversely when she behaves to your child. negatively you respond dramatically. In reality, the  Catch your child being good. best way to teach your child how to act appropriately The gains you see in your child seem like small is to attend to the positive behaviors and ignore the improvements or behaviors which would only be inappropriate behaviors. Particularly for children expected due to chronological age. However all with DS-ASD, the easier it is to discriminate between gains and appropriate behaviors are important and responses to positive and negative behaviors, the should result in positive attention. Statements such quicker she will learn that the best (and only) way to as, “Nice sitting on the toilet” or “Nice brushing get any form of attention is through good behavior. teeth” are important for your child to hear. Differential responding is most effective when both  Provide positive attention for behaviors that cannot positive attention and ignoring are implemented. In occur at the same time as inappropriate behav- this way, your child learns inappropriate behaviors iors. result in no attention and acceptable behaviors re- sult in positive attention. This eliminates at least For example, if your child tantrums often, praise one motivation for inappropriate behaviors such as her for playing quietly and using a normal voice attention seeking. during her play. If she is disruptive to others fre- The components of these strategies, positive atten- quently during her independent play, praise her tion and ignoring, are detailed below. when she is playing independently and not being disruptive. These methods will teach her acceptable Giving Positive Attention Effectively: alternatives for misbehaviors.  Make eye contact with your child and speak enthu-  Get in the habit of catching good behavior and siastically. providing positive attention at least once every five  Be specific about the behavior that you liked. minutes. For instance, “Good being quiet” or “Nice hands to You will know you are praising your child enough, self,” instead of: “Good girl.” when you feel you are doing it too much or too  Keep praise statements simple. often.  For instance, “Good picking up toys” instead of, Be sure that good behaviors receive more attention “That was good picking up your toys so that no than inappropriate behaviors. one would trip on them.”  Provide many opportunities for positive attention.  Give attention immediately following the behavior It is easier to promote appropriate behaviors when that you liked. your child is doing something she likes to do and Delays in rewards make it more difficult for her to you are both focussed on that one activity (instead determine what she did to receive attention. of cooking dinner, correcting homework, or folding laundry while your child plays). The more you ar-  Withhold attention to an inappropriate behavior (or range the environment to be conducive to appropri- anything following it) occurring within the last 30 ate behavior the better the chance she will learn seconds. how to act appropriately. For example, your child should exhibit at least 30 seconds of good behavior before you praise her Continued on page 30 29 Disability Solutions September/October 1999 Teaching New Skills

Continued from page 29

Using Planned Ignoring  Do not allow your child to escape a task due to  Determine what is “ignorable behavior.” Ignorable ignorable behaviors. behavior is typically defined as behaviors that are If you are working on a task, such as putting toys not harmful to the child, others, or others’ belong- away, continue to follow through with the task ings. It is important that all family members and even if behaviors you have defined as “ignorable” caregivers be aware of the definition to be consistent occur. in their response. Ignoring is a very active strategy that requires that you  Ignore as soon as the behavior occurs. Delaying withhold eye contact and make no verbal response to your response (ignoring) will confuse your child if the child. However, it does not mean to stand back too much time passes between her action and your and allow destructive or other behavior to occur. It response. is important at times to prevent and block behaviors  Ignore consistently. Whenever ignorable behaviors as well as removing or diverting a child from an area occur, be consistent in your response. The best way or situation. It is important to keep everyone and for your child to learn the limits to her behavior and everything safe. to determine which behaviors will result in the de- Conclusion sired attention is through consistent responses. Children with Down syndrome and autistic spectrum  Make ignoring obvious. To have an impact on be- present a unique blend of characteristics. The dual havior, your child must be aware that attention diagnosis also complicates intervention strategies, is being removed because of specific behaviors particularly from a behavioral standpoint. Parents and she has done. This is particularly challenging for professionals are often unsure what to do for behav- children with Ds-ASD who are less aware of social ioral issues when the dual diagnosis is present. cues. Therefore, ignoring must be made obvious A practical approach is to use teaching strategies by: and behavior management methods that address the looking away, specific needs of your child and your family. Although keeping a neutral facial expression, this is best done with the assistance of a behavior spe- talking with others in child’s presence, cialist, some of the strategies described in this article restricting physical contact, are effective in helping you begin to make progress tuning the child out, or with your child. engaging in household tasks. Once you understand the main areas of need for  Expect behaviors to escalate. your child and your family and the individual motiva- Things often get worse before they get better. This tions for behavior, treatment of behavioral issues your is because your child increases the frequency of child with Down syndrome and autistic spectrum is behaviors to receive the attention she is accustomed less mystifying. The core to effective teaching and for them. This does not mean that ignoring is not appropriate behavior is consistency, consistency, and working—quite the opposite—she is merely testing the new rules that have changed.     Distract yourself from attending to difficult behav- Naomi Swiezy, Ph.D., is a Clinical Assistant Professor iors. of Psychology in Psychiatry in the Autism Clinic at When your child’s behaviors escalate, it may be best the Riley Hospital for children at Indiana University to leave the room, turn on the radio or TV, pick up a Medical Center. Prior to this she was the director of magazine, or call someone on the phone to prevent the Autism and Pervasive Developmental Clinic and you from reacting to your child’s behaviors. Keep an behavioral consultant to the Down Syndrome Clinic at ear out for situations that require your immediate Kennedy Krieger Institute. attention, however.

30 Volume 3, Issue 5 & 6 Disability Solutions Sensory Integration: Observations of Children with Down Syndrome and Autistic Spectrum Disorders by Mary Lashno, OTR

or many children with Down syndrome and eventually he will be able to reach forward, touch the ball, make it move and pull it towards him to play. autistic spectrum disorder (DS-ASD) Sensory F This child’s sensory system is organizing information Integration (SI) is one intervention to consider. Many in order to allow him to learn and successfully master times the way a child with DS-ASD behaves or reacts his environment. When basic senses are integrated, is because he processes sensory information from the the child continues to learn and grow from sensory situation differently than other children. This article information. Through movement and experiences, explains sensory integration, how it effects behavior he learns how to move against the pull of gravity and in children with DS-ASD, and offers some suggestions feel comfortable with his body awareness in space. He for common sensory-related behaviors you can use begins to develop a mental picture of where his body while you set up an appropriate SI program with a parts are and how they are related to him. trained therapist. If you watch a small child learn a new task, initially Sensory integration is the process of taking in a great deal of concentration and effort are noted. The information from the environment through various task appears clumsy but as he continues to “practice”, sensory systems (touch, smell, sight, movement, his skills become more proficient and not only has he sound and the pull of gravity on the body). Informa- mastered the task but will continue to make it more tion is processed through the brain. The brain then challenging. This is sensory integration. interprets, organizes and directs the body to respond Unfortunately, there are some children whose appropriately to that sensory information. Sensory sensory systems do not develop efficiently. They may experiences happen continually and as they do, your have a sensory processing disorder. A child with a sen- child continues to learn and respond to his environ- sory disorder gathers information from sight, sound, ment in more complex ways. touch, movement and pull of gravity like any other If you watch a small baby play, you may be able child. However, when the data enters the brain, it is to get a better sense of what sensory integration is. not organized or processed correctly. As a result, the A baby’s primary learning senses include vision, skin brain sends out an inappropriate response. Learning (tactile), movement and gravity (vestibular), and is based on this information and abnormal response muscles, joints and ligaments (proprioception). As a or behavior are usually noted. The brain can respond child lies on his belly, his mother may place a musical in two ways. ball in front of him. Following initial movement and sound, the child may try to lift his head to view the Hyporesponsive: in spite of large amounts of sensory object. Initially, this will be difficult due to the pull of input, the brain fails to register and doesn’t respond gravity, pushing his head back to the floor. Normal to input. curiosity and “inner drive” will engage the child to Hyperesponsive: the brain “short-circuits” and regis- continue to work on raising his head (vestibular). His ters sensations too intensely. arms and legs will also move (proprioception) in an Let’s break this down to get a better picture of these effort to help keep his head up in order to view the responses. Most children enjoy being touched by toy. His brain is organizing and sequencing all the their parent. A light touch on the hand or head usu- sensory information received with each movement ally makes a child respond positively. However, there of arms, legs, and head. His muscles are respond- are some children who view this touch as a “fight or ing in a way to help him achieve his goal of looking flight” response. That is a hyperesponsive response. up to see the toy. With each “adaptive response,” he The brain records this as danger and the child reacts continues to refine his skills. As he achieves a certain by screaming, pulling away, or avoiding this touch level of success, he continues to “up the ante” and Continued on page 32 31 Disability Solutions September/October 1999 Sensory Integration: Clinic

Continued from page 31 or sensory input. The response is comparable to child doesn’t process information correctly: he may walking down an unfamiliar dark alley at night. All bang into the same object repeatedly. For example, of our senses are on “alert” in order for our body to a child with a normal sensory system may run into respond to danger. Our eyes widen, our breathing is the room and not see a toy on the floor. He may trip shallow, our heart beats faster, and we are prepar- and fall, get up and continue to play. If he comes into ing our body to respond by either running or fighting the room again, he will not necessarily look at the toy to avoid danger. Imagine if your system was always on the floor, but rather his body and postures will on alert and you felt that every touch or movement adjust to run around the object rather than falling meant danger. It would be very difficult to explore into it again. Suppose you were in a darkened room, your environment and learn from those experiences unable to see and you were told to find your way out. because your brain is constantly registering danger. You would immediately try to “call in” all other senses As a result, many children who are hyperesponsive available in order to gather as much information to avoid any form of input through tactile (touch), ves- find your way out of the room. You would touch the tibular (gravity), or proprioceptive (movement). Due walls, feel the floor, and listen for clues to be suc- to the brain’s abnormal response to sensory input, cessful. This works fine if your sensory system works this child usually avoids input and doesn’t actively well; however, someone who is hyposensitive will use explore his environment, thereby missing out on valu- his brain to constantly search for information in this able sensory learning experiences. This child may also intense way to “make sense” of the world. prefer certain positions and scream with any type of Although it seems as though a child could fall transition or change in daily routine. He may avoid into either category, the majority of children with a certain clothes, food textures, hate movement, or sit sensory processing disorder fall into both categories. in one position and perform a perseverative (same This means they can be hyporesponsive to some input action repeated over and over) movement in an effort and hyperesponsive to other types of input. Also, even to “calm” down his system. though their brains are not processing information The hyposensitive child may be viewed as someone in a “normal” format, they will exhibit behaviors that who constantly bombards his sensory system in an may appear “weird.” In actuality, they are trying to effort to gain appropriate sensory information. This make sense of input and will often seek out what they child may be constantly touching objects, mouthing feel their brain is requesting. For example, if they everything in sight, bumping into walls, or falling feel they need proprioceptive input they might jump, repeatedly. He may fall or hurt himself, but doesn’t push, or pull; for vestibular input they might spin or appear to respond to pain in a way you expect such rock; for tactile input they might seek deep pressure. as crying, rubbing his arm, and so on. A hyposensitive They may also demonstrate odd behaviors, such as playing only in a specific area, not explore a room, avoid certain toys, move or run around constantly, purposely run into walls, or push people. Children tend to know what sensory informa- tion they need and although these behaviors appear strange to us, it is the child’s way of making sense of his environment and trying to adapt to daily life. It should be noted that all of us will have quirks about certain types of input and we adapt to the conditions. However, as long as it does not impact our ability to learn and function within our environment, it is not considered an issue. Children with a sensory dysfunc- tion are unable to learn and function within their daily routine and until they can “make sense” or modulate the input (turn up or down the sensory response for Madison Duffey takes a bath with her favorite the brain to process and respond appropriately) they ball and rubber ducky. will continue to demonstrate a dysfunctional sensory system. 32 Volume 3, Issue 5 & 6 Disability Solutions Sensory Integration: Clinic

Through therapeutic intervention, an Occupational Therapist provides the appropriate sensory input in order to help the child modulate information cor- rectly. The child will then begin to register, modulate and respond in a normal fashion which will increase exploration and allow learning to happen. Some of the children I have seen through the Down Syndrome Clinic who have DS-ASD demonstrate the areas of concern discussed above. Families will usually report that their child was developing within normal limits for a child with Down syndrome only up until they were around a year old. At that time, they began to demonstrate decreased skills in play- ing, social interaction, and many abnormal behaviors. Some on these reported behaviors include shaking fingers, chains, and similar objects in front of their face, food refusal, looking directly into a light source, Peter Ben Paul and his friend, Laura Collier, and preservative type motions rather than purpose- enjoy a pile of leaves. ful play. Some of the other behaviors that have been reported or observed by families of children with DS- for your child with DS-ASD is to normalize and help ASD include: the child “make sense” of sensory input so he can  Decreased or no eye contact, explore and learn from his environment. Below is a list of goals and types of therapeutic intervention that  Excessive mouthing of objects, may be helpful.  Decreased or no purposeful play with toys, The first step of sensory integration therapy is to  Staring directly into lights, combine an informal observation with information  Abnormal hand movement (such as flicking fingers you share about your child that is specific to sensory in front of eyes or waving hands away from body), processing. You may be asked to fill out a question-  Refusal to hold objects (such as clothing or a spoon naire regarding your child’s responses to various to self feed), types of sensory input. This information determines  Picky eater (especially for specific textures), your child’s sensory processing function: what areas are hyper- or hyporesponsive to sensory input. The  Flat affect, observations, evaluations, and intervention for sen-  Self-stimulatory behaviors (such as rocking, bang- sory dysfunction should be done by a therapist who ing head, humming, or screaming), and is trained in and has experience with Sensory Integra-  Decreased interaction with people. tion. Through therapeutic intervention, the therapist If your child sounds like the one listed above, he may will be able to provide the input needed which allows be diagnosed with DS-ASD. Many of the behaviors your child to begin to “register” and respond more listed are also noted in the children with autistic appropriately. Recommendations can then be made spectrum disorder. Additionally, it is well documented suggesting ways to provide specific sensory activi- that many children with autistic spectrum have sig- ties throughout your child’s daily routine. The focus nificant difficulty with sensory processing. It is easy to of SI Treatment is to regulate your child’s ability to see that many of these “odd” behaviors could possibly register and modulate sensory input in order to al- be related to your child’s attempts to calm down or low the normal process of exploration and learning make sense of the world through the sensory input to develop. they are receiving. Children with DS-ASD usually do not need to par- If your child has behaviors like the ones listed ticipate in a true Sensory Integration type of therapy. above and the behaviors are impacting developmen- This is usually a very intensive therapy performed on tal growth, therapeutic intervention is essential. The a weekly basis for at least a year. SI Therapy for a goal of a therapeutic sensory integration program Continued on page 34 33 Disability Solutions September/October 1999 Sensory Integration: Clinic

Continued from page 33 child with DS-ASD most likely involves intervention may hold onto certain, preferred objects. Instead of once or twice a month. The goal is to determine sen- purposeful play, however, he will use a preservative sory issues and provide treatment and to train you to type motion, such as banging 2 blocks together or carryover activities at home and encourage them at throwing off a tray, shaking and so on. He is only able school. As your child’s sensory processing improves, to process limited amounts of information from the therapy is reduced and focuses on providing activi- object, which is seen more in loud, banging activities ties for you to use with your child that increase his rather than purposeful play. If this sounds like your tolerance of sensory input. child, he may benefit from the following activities: Although therapy is highly recommended, it may  Provide deep pressure to the hands, such as plac- not always be practical. It is not always covered by ing your hand firmly on top of his and guiding him medical insurance, so the cost may be a problem through an activity. as well as the availability of a trained Occupational  Offer vibration on his hands from toys such as a Therapist. With that in mind, here is a list of some BumbleBall™. common behaviors seen in children with sensory pro-  Provide various types of textures, such as soft, cessing concerns, possible reasons for the behavior, hard, scratchy. Be sure to consistently monitor and suggestions that may be helpful. The bottom line your child’s response to the input. is that as parents you spend the most time observing  Provide various types of textures within a child’s your child and, most likely, you have already begun reach (such as a basket or box) which will allows to provide the child with the types of input that they your child access to explore these items on his are seeking. own. Constant mouthing of objects, chewing on clothes, Purposely banging into walls, furniture, pushing or and other objects. knocking over objects. If your child is constantly mouthing or chewing it may be one method he uses to calm himself. Here are If your child seems to purposefully bang into walls, some suggestions: furniture, or knock over objects, he probably is not  Give your child various types of textures or stimuli processing movement. Through these activities he is to mouth such as the Discovery Toy that is rub- seeking the sensation of movement either through ber and has 4 different types of tips or nubs. Each rocking, spinning, banging into objects, or walls. He provides a different type of sensory input. may also be trying to provide his body with deep pres- sure in an effort to calm his system. Some suggested  Give some deep pressure to the face with your activities include: hands, his hands, or a terry cloth towel going in a  slow, downward direction. Fill a wagon or box with heavier objects that the child could push or pull around the room.  Vibration is often enjoyable if it is introduced slowly.  Be cautious with this type of sensory input and use Fill a backpack with heavier books (within reason) it sparingly. Try to let your child dictate how much and put the backpack on your child’s back. This or little vibration massage he receives. may provide the feedback the child needs to un- derstand where his body is in space.  Chewing on therapy tubing or drinking milkshakes  or Slurpees through a straw are often helpful. Other activities that provide proprioceptive input, such as deep pressure, roughhousing, jumping on  Chewy or crunchy foods such as pretzels, trail mix a small trampoline (with supervision), tug of war, or Starburst may also be a preferred activity for or wrapping up in a blanket, may help him calm your child. and process information more appropriately. Refusal to hold items in hands Excessive spinning or rocking: If your child is hypersensitive in the hands, he will If your child spends too much time rocking or spin- resist holding objects in his hands. He may become ning, he may be trying to calm his system down. He very upset if his hands are dirty or need to be cleaned. may also be seeking movement input. Activities that When he holds an object, it is with a very weak grasp may be helpful include: that is more at the fingertips than the palm. Yet he 34 Volume 3, Issue 5 & 6 Disability Solutions

Sensory Integration: Clinic

 Using of a child size rocker, rocking horse, or you he is exhibiting a self-stimulatory type of behavior, slowly rocking him in your lap with deep pressure such as light flashing on a shiny object being moved provided (holding him snugly). in front of the eyes, staring at a bright light, and so  Watch your child during these activities. If your on. Although he will want to continue these behaviors, child calms with the rocking, he may also benefit you may want to try to put a purpose to the activity. from your singing rhythmic songs or playing calm Some ways to do this include: music while he rocks.  Providing toys that provide bright lights that turn on and off with a switch. Provide hand-over-hand Looking into bright lights, flicking fingers and dan- assistance with the switch as needed to encourage gling objects in front of the face. your child to activate the toy independently. If your child likes to look into lights, flick his fingers,  Provide deep pressure over his hands when he or dangle things in front of his face, he is probably dangles objects in front of his face. When you do, looking for ways to increase visual input. To do this help “walk” him through placing objects in various type containers, shaking, opening, closing and hid- ing objects. Learning to add purpose to these self-stimulatory behaviors is a slow, process and may take some time to transition child into use of the object in a more purposeful task. In addition to these suggestions, I highly recom- mend sensory integration treatment be performed and guided by an Occupational Therapist trained in Sensory Integration. Although the suggestions listed above may prove helpful, they are only general sug- gestions and may not work for your child. Continue to observe, be patient, and use creativity as you work with your child. As he begins to accept sensory input that he is able to process and “make sense” of, his abil- ity to use hands and body will increase along with his ability to play and interact within his environment.

  

Mary Lashno, O.T.R., is a registered occupational therapist trained in sensory integration therapy. She currently practices at Kennedy Krieger Institute in Baltimore, Maryland.

35 Disability Solutions September/October 1999

Let Me Hear Your Voice: A Family’s Triumph Over Au- them to our activities rather than a harsh collision tism by Catherine Maurice. Published by Ballantine or battle of wills. The book is difficult to read, with Books, 1994. ISBN: 0-449-90664-7. $12.00. language that can leave a parent confused or dulled by its complexity. You need to be sitting in an uncom- This widely acclaimed book offers a mother’s story of fortable chair if you read it at the end of a long day. the process she went through as two of her children It is, however, worth the time and effort. were diagnosed with autism. Catherine Maurice writes of the intense, tenacious, heart-wrenching battle she Right From the Start: Behavioral Intervention for Young wages with the “autism beast” that has invaded their Children with Autism. A Guide for Parents and Profes- lives. She settles on a program of Applied Behavioral sionals by Sandra L. Harris, Ph. D. and Mary Jane Analysis for her children, which proves effective. The Weiss, Ph. D. Published by Woodbine House, 1998. story is not sugar-coated, nor does it claim success ISBN: 1-890627-02-X. $14.95. for everyone. Notably, it does not hide the emotional strain of implementing an intense ABA program in Educational programs and teaching strategies are the home. among the first decisions parents of children newly diagnosed with DS-ASD must make. In Right From Targeting Autism: What We Know, Don’t Know, and the Start, Sandra Harris provides an in-depth look Can Do to Help Young Children with Autism and Re- at one type of strategy available: Applied Behavioral lated Disorders by Shirley Cohen. Published by Uni- Analysis. Harris provides a balanced, realistic discus- versity of California Press, 1998. ISBN: 0520213092. sion of what parents must consider before choosing a $14.95. particular program for their child and what key ele- A comprehensive overview of the most commonly dis- ments an intensive behavioral intervention program cussed teaching and treatment options for children should have. If you are considering Applied Behavioral with autism. Dr. Cohen uses her analytical skills to Analysis, this resource gives you what you need to be raise questions regarding each approach in a way that an informed consumer. encourages parents and professionals to consider the personality and needs of the child rather than philo- Parent Survival Manual: A Guide to Crisis Resolution sophical issues. For families of children with Down in Autism and Related Developmental Disorders edited syndrome who have just been given a diagnosis of by Eric Schopler. Published by Plenum Press, 1995. autistic spectrum disorder, Targeting Autism is an ISBN: 0-306-44977-3. $29.95. easy-to-follow guide through a complicated maze of In this book, Eric Schopler pulls together a variety information. of topics parents of children with DS-ASD will find worthwhile information for crisis intervention at Children with Autism: A Parents’ Guide edited by Mi- home. One of my favorite sections is “repetitive be- chael Powers, Psy.D. Published by Woodbine House, haviors and special interests.” Schopler has compiled 1989. ISBN: 0-933149-16-6. $14.95. a variety of solutions used by other parents to solve Children with Autism is a general guide written for or reduce those “behaviors” that can be nerve-wrack- parents covering topics related to medical and edu- ing for families. There are 350 anecdotes shared by cational decisions for young children up to age 6. parents that are, in turn, analyzed by behavior thera- Although it contains helpful information, the refer- pists. This analysis helps the reader, perhaps new to ence to age may make it difficult for families who are the idea of autistic spectrum, follow the process of introduced to the idea of autism later in their child’s problem-solving. If you think your child is the only life (age 7-10). One of the most helpful aspects of this one who…I will bet you will find a similar situation book is the correlation made between decisions and in this book. programs used in childhood and their use or gener- alization of skills in adulthood. Autism Through the Lifespan: The Eden Model by Da- vid L. Holmes, Ed.D. Published by Woodbine House, The Child with Special Needs: Encouraging Intellectual 1997. ISBN: 0-933149-28-X. $21.95. and Emotional Growth by Stanley I. Greenspan, M.D. The Eden Family of services provides comprehensive and Serena Wieder, Ph. D. Published by Addison-Wes- behaviorally based services to children and adults ley, 1998. ISBN: 0-201-40726-4. $27.10. with autism in Princeton, NJ. In his book, Dr. Holmes After years of domination by ABA and Lovaas strate- shares the philosophies, methods, and goals of this gies, Drs. Greenspan and Wieder offer a completely successful program. Because of the detail in program differentresources approach to connecting with a child who has description, this book may be overwhelming to parents autistic spectrum disorder. The strategy is based on a new to DS-ASD. However, I found it particularly help- method they call “Floor time” which centers on join- ful as I struggled to understand the term “aversive” ing your child in their world first , gradually enticing in literature detailing behavior modification. I often 36 Volume 3, Issue 5 & 6 Disability Solutions

re-visit this book as a reference when I am confused. able, teachable steps. Different strategies for teaching Each time I find a different idea or concept that causes skills such as making a bed, brushing teeth, or get- me to re-think how I am addressing the immediate ting dressed are outlined. Once you try a few of the situations in my home. strategies you will gain confidence in your own ability to break a task apart to small steps and choose an Activity Schedules for Children with Autism: Teaching appropriate strategy to encourage your child to work Independent Behavior by Lynn E. McClannahan, Ph.D. to doing them independently. and Patricia J. Krantz, Ph. D. Published by Woodbine House, 1999. ISBN: 0-933149-93-X. $14.95. Siblings of Children with Autism: A Guide for Families Imagining a child with DS-ASD who requires con- by Sandra L. Harris, Ph. D. Published by Woodbine stant prompting to get through a task doing things House, 1994. ISBN: 0-933149-71-9. $12.95. independently might be difficult. In the bookActivity Brothers and sisters of children with disabilities often Schedules for Children with Autism, Krantz and Mc- fall between the cracks. It isn’t hard to imagine how Clannahan spell out a way it can be done. Using this quickly this might happen during times of crisis. In method children are taught to follow prompts they her book, Dr. Harris shares strategies for dealing see in pictures schedules (photos or symbols) for each with specific issues related to brothers and sisters of step of a task. Although they begin this process with children with autism. She stresses the importance of an adult or peer to prompt them, the authors stress communication and balance in personal and family the importance of fading those prompts allowing the time, which is something that is easily forgotten. child to use the pictures as their guide. The authors detail the process of making the schedule, determining Views From Our Shoes edited by Donald J. Meyer. what pictures you need for a task, how to teach the Published by Woodbine House, 1997. ISBN: 0-93149- visual prompt, and a method for setting your child up 98-0. $14.95. to accomplish a series of tasks independently using Views From Our Shoes is a collection of 45 essays visual cues. My vision of what is possible dramati- written by brothers and sisters of children with a cally changed when I read this book. Coupled with variety of disabilities. Included are essays written by Visual Strategies for Communication the possibilities siblings of children with Down syndrome alone and seem endless. autism alone. For siblings or classmates who are too old for most books written on this subject, Views From Visual Strategies for Improving Communication: Volume Our Shoes offers insight and compassion from true 1: Practical Supports for School and Home by Linda experts in dealing with kids with disabilities. This A. Hodgdon, M.Ed., CCC-SLP. Published by Quirk year, these essays were the perfect addition to Andy’s Roberts Publishing, 1998. ISBN: 0-9616789-1-5. fourth grade class unit on differences. Many of the $39.95. essays are written by brothers and sisters who are Using visual strategies is a way to promote indepen- the same age as Andy’s classmates offering more age dence, learning, and sanity for everyone. Linda Hodg- appropriate and thoughtful perspective than typical don promotes picture use for more than transitions. disability awareness stories. She suggests using photos or picture symbols to make the “house rules” and expectations clear to everyone. Andy and His Yellow Frisbee by Mary Thompson. Pub- In Visual Strategies Hodgdon focuses on activities lished by Woodbine House, 1996. ISBN: 0-933149- and methods for both home and school, which takes 83-2. $14.95. one step out of problem-solving for parents. I have I originally purchased this book merely because it had found it an invaluable resource for structuring our my son’s name: Andy. When I read the story, I realized home and broadening my ideas of what is possible that if I substituted a jump rope for the Frisbee it was using visual systems. Visual Strategies for Improving Andy. It has been useful to share this book with his Communication is the perfect companion to Activity classmates, which often starts a discussion about how Schedules for Children with Autism. to play with Andy. His friends and mentors like the girl in the story, Sarah, approach Andy slowly and at Steps to Independence: Teaching Everyday Skills to his level. Andy and His Yellow Frisbee sends a much- Children with Special Needs (Third edition) by Bruce L. needed message about tolerance for and acceptance of Baker and Alan J. Brightman. Published by Brookes each other. I found using Andy along with the book, Publishing, 1997. ISBN: 1-55766-268-1. $28.00. We’ll Paint the Octopus Red as introductions to my Stepsresources to Independence is a step-by-step guide to help son’s disabiilty to his classmates a good combination. parents teach children essential life skills. With great Both offer questions and answers at the end of the detail, a variety of skills are broken down into manage- story that initiated positive discussions. 37 Disability Solutions September/October 1999

We’ll Paint the Octopus Red by Stephanie Stuve-Bo- Learning to Listen: Positive Approaches and People with deen. Illustrated by Pam DeVito. Published by Wood- Difficult Behavior by Herbert Lovett, Ph. D. Published bine House, 1998. ISBN: 1-890627-06-2. $14.95. by Paul H. Brookes, Co., 1997. ISBN: 1-55766-164- We’ll Paint the Octopus Red is my favorite book to 2. $27.00. use for an introductory story about Down syndrome In this ground-breaking book, Lovett shares the to young children. Common questions and concerns importance of meeting the person with challenging about Down syndrome are either answered in the behaviors on a human level. Lovett spends time il- story or in the Question and Answer section in the lustrating how “behavior,” even when aggressive, is back of the book. Together with Andy and His Yellow often communicating something that is difficult for Frisbee the stories begin to create an image of my son someone with a disability to convey appropriately. for his classmates. Other themes include how actions we believe are re- spectful may be hurtful and create a barrier between Just the Facts edited by H.F. Johnston, M.T. Witovsky, you and the person with a disability. If you or some- and J.J. Fruehling. Published by The Wisconsin Child one working with your child is new to using positive Psychopharmacology Information Service. CPIS, 6001 behavioral supports for challenging behaviors, this is Research Park Blvd. #1568, Madison, WI 53719- an invaluable resource. 1176. Fax: 608/263-0265. www.psychiatry.wisc.edu. $15.00 for four issues, $25.00 for eight. DS-Autism Listserv. Joan E. Guthrie Medlen, owner. Just the Facts provides information about psychiatric DS-Autism is an email list for families and others disorders such as Obsessive Compulsive Disorder interested in discussing issues related to the dual and autistic spectrum as well as the medications diagnosis of Down syndrome and autistic spectrum that may be used in these situations. Since there disorder. The listserv is intended to be a virtual sup- are many medications that may be suggested for a port group where we share funny, challenging, excit- variety of reasons, it is helpful to have information ing and often exhausting moments in our lives. There in writing that explains the reason for its choice and are two ways to join the list: what to look for (both good and bad). I have found it 1. Go to: http://www.jps.net/jmedlen/ds-autism.htm to be an understandable resource for very technical and follow the instructions for signing up, or information. 2. Send an email to: [email protected]. Once you are subscribed using either method, a Sleep Better! A Guide to Improving Sleep for Children welcome letter will be sent to you explaining how to with Special Needs, by V. Mark Durand. Published post to the list. by Paul H. Brookes, Co., 1998. ISBN: 1-55766-315- 7. $21.95. Down Syndrome and Autism Parent Support Group. When was the last time you can remember sleep Glenn Vatter, coordinator. 3124 Henneberry Rd., schedules being routine in your home? Many children Jamesville, NY, 13078. 315/677-3844. glendot@ with autism and other disabilities have disrupted worldnet.att.net. sleep patterns that can leave families chronically tired. The DS/Autism Parent Support Group is a list, In his book, Sleep Better!, Durand offers methods to maintained through the mail, of parents who have understand your child’s sleep problem and multiple children with the dual diagnosis of Down syndrome strategies for solving them. With carefully woven case and autistic spectrum disorder. The listing includes studies, Durand illustrates the art of modifying theory parents’ names, addresses, phone number, email to meet the needs of each family and their child. It where applicable, name and age of all children and is refreshing to read a resource on this subject that any other interesting info such as treatments tried, considers the unique emotional and routine-related parent involvement in organizations, special educa- needs of children with special needs and their families. tion teaching, or nursing. Only members receive Don’t be fooled into thinking the answers are easy, the list of families. It is not provided to researchers, however. Solving sleep problems takes a commitment students, or other parent groups. The family list is to investigating the problem as well as implementing also not sent through email, to discourage unwanted a plan for a solution, which may need to be changed. distribution. Many members have email and also are Yet with the idea of a reliable 8 hours of sleep as on the DS-Autism Listserv. Information packets are motivation,resources reading Sleep Better! and committing the available giving information on the dual diagnosis, time to the process is palatable. case studies, and so on. This is available to anyone, whether on the list or not.

38 Volume 3, Issue 5 & 6 Disability Solutions

Related articles from earlier issues of Disability ing, and customizable, they can be used to develop and reinforce important cognitive and communication Solutions. skills. They are another form of symbol or picture “Augmentative and Alternative Communication Tech- that can be used for visual strategies, schedules, and niques in Inclusive Classrooms,” by Pat Mirenda, communication boards. You can purchase standard Ph.D. Disability Solutions Volume 3: 4, July/August, packs or customized packs that include symbols you 1999. are most interested in. Prices of the different symbol packs vary, but are reasonable. “Comunicating with Your Child: Observe, Wait, and Disability Solu- Listen,” by Jane Grosfield, CCC/SLP. Picture This… CD. Created by Silver Lining Multime- tions Volume 3: 4, July/August, 1999. dia, Inc. P.O. Box 2201, Poughkeepsie, NY 12601. “Teaching Sign Language,” by Claire Donovan, S-LP 914/462-8714. Fax 914/463-0437. www.silver- (C). Disability Solutions Volume 2: 5, January/Febru- liningmm.com. Also available through Woodbine ary, 1998. Out of Print. House, Inc. 800/843-7323. www.woodbinehouse. com. $49.95. “Strategies for Augmenting Communication,” by Picture This… is an easy-to-use computer program Kimberly Voss. Disability Solutions Volume 2: 2, with over 2400 high-resolution photos shot against July/August, 1997. Out of Print. a plain background. The photos are sorted into the These articles and other back issues of Disability following categories: actions, animals, bathroom, Solutions are available free from our website (www. bedroom, body, buildings, clothing, colors, electron- disabilitysolutions.org) as Adobe Acrobat Reader files. ics, emotions, food, furniture, holidays, household, Back issues of Disability Solutions are available for kitchen, lineart, music, nature, opposites, people, $2.50 from the publication address (see page 2). places, prepositions, rooms, sequences, shapes, sports, tools, toys, travel and vehicles. Picture and Symbol Resources If your child is using photos instead of line-drawn symbols, they are perfect for communication boards, Boardmaker. Concept developed by the staff at Eri- lotto, schedules, teaching emotions, social stories, noak, of Mississauga, Ontario, Canada. Published and so on. The CD provides what you need to cre- by Mayer-Johnson Company. P.O. Box 1579, Solana ate individual cards in different sizes as well as lotto Beach, CA 92075. 800/550-0084. www.mayer-john- boards. The only disadvantage is to use them to their son.com. $399.00 (Mac or Windows). maximum effect, you need to have some computer Though at first blush this may seem like a big invest- savvy. ment, it is a fantastic tool for parents to own. Board- maker uses the Pictures Communication Symbols Other Resources (PCS) created by Mayer-Johnson. These symbols are widely used by schools and speech pathologists to cre- KidKit. P.O. Box 1,1Clarendon Hills, IL 60514. ate communication boards, PECS symbols, and other 630/415-1870. [email protected]. www.kidkit.com materials. Using this program, families can create KidKit is a hands-on way to enhance communications communication boards, schedules, books, curricular opportunities and structure for children with autism adaptations, and whatever else your family needs. and language delays. KidKit products are designed by I have found it much easier to be able to create my educators interested in helping parents of children own materials knowing that if it doesn’t work I can with Autism communicate effectively at home. KidKit try again rather than worry about how I will get more produces hands-on tools to communicate with chil- symbols from the speech pathologist if this doesn’t dren using visual systems for communication. KidKit work or I lose what I have. uses clear, concrete presentations of concepts such as counting, reading, and social behavior. Children with KidAccess. 6526 Darlington Road, Pittsburgh, PA language delays often rely on their visual strengths 15217. 412/521-8552. www.kidaccess.com. Prices to learn. KidKit addresses this strength and reduces vary. the anxiety of transition through the use of picture Kid Access Co. makes “eye-cons.” Eye-cons are a set schedules, social stories and sensory integration ofresources symbols for organizing the worlds of non-readers materials. and other visual learners. Concrete, visually engag-

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Disability Solutions A Resource for Families and Others Interested in Down Syndrome and Developmental Disabilities

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